Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work

I met Trisha Torrey, who writes a Patient Empowerment Blog, at the 2009 Connected Health Symposium in Boston, October 21-22. She wrote about my research in Your First Medical Opinion – Don’t Ask Don’t Tell? and included a poll. The results (you see them after you vote) show that 55% of the 40 respondents so far “don’t usually tell my doctor about my online research”. Trisha has also written about Sharing Internet Health Information With Your Doctor where she presents a collaborative approach and guidelines for sharing information with a doctor, starkly contrasting with the patient rather scathingly portrayed in When the Patient Is a Googler.

I presented about patient-provider communication at the Medicine 2.0 Conference in Toronto September 18, 2009.  My extended abstract, Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work, follows:

Background: A disconnect currently exists between patients’ use of the Internet and their consultations with their physicians. Too often, patients don’t tell their physicians about their Internet use and physicians don’t ask; both suffer due to the erosion of trust and missed educational opportunities. Better patient-physician communication about Internet use is needed to help patients become truly empowered healthcare consumers.

Objectives: Too little attention is paid to improving how patients locate and use health Web sites and communicate about their use of these Web sites with their physicians. The very people who can best help patients, their medical providers, become disconnected from these so-called empowered healthcare consumers, who use the Internet instead of, before, or after consultations with their physicians without it being discussed or integrated into their care. Poor health outcomes can occur when patients have unexpressed concerns arising from the Web sites they have accessed, don’t believe their physician when a diagnosis or treatment plan differs from what they obtained from the Internet, use their doctor for a second opinion without disclosing that they obtained their first online, make poor decisions without or disregarding medical input, or scour the Internet for miracle cures.

Methods: Based on a literature review, extensive evaluations of health Web sites, and interviews with patients and physicians, better health outcomes for patients can be provided through the design of better user experiences, physician education about patient use of the Internet, patient education about effective Internet use, and the integration of Internet use into patient-physician consultations.

Results: While the designers of e-commerce Web sites focus on user experience design to create successful initial and repeat visits, designers of health Web sites often overlook the importance of the user experience. To help healthcare consumers in all aspects of locating and using online health information, health Web sites need to accommodate the range of needs and varying degrees of health literacy of site visitors. Well-established user experience design techniques can facilitate this, namely the use of personas, competitive analysis, and formative evaluation at all stages of design and development. Health Web sites can also incorporate guidelines about when and how to communicate with healthcare professionals about the information on the Web site.

Physicians need to have a better understanding of the extent to which and the reasons their patients are online before, and will likely go online after, a consultation. Currently, physicians rarely ask patients about their use of the health Web sites or any concerns that they have as a result, nor do they recommend reliable Web sites to newly diagnosed patients. Many fear the patient who arrives with a ream of printouts or who takes over a consultation. But worse than that is when patients have unexpressed fears or distrust their diagnoses because of what they accessed online. Physician training about how and when to ask patients can be aided by adding questions about Web sites used and any concerns to the form patients fill out in the waiting room, and physicians can receive guidance about reliable Web sites to recommend to their patients.

When patients go online, they often start at a search engine and rarely determine the source or date of the information they are using. Better patient education is needed on how to discern credible Web sites and health information on the Internet, a skill that is becoming even more important with the wealth of user-generated content, the many erroneous or misleading Web sites that compete for their attention in searches, and the immediacy of access possible from Internet-enabled mobile devices. Furthermore, patients need guidance about how to discuss their Internet use with their physician appropriately, without taking over the consultation or providing conclusions to a physician who is probing for symptoms. Finally, patients need to seek recommendations for Web sites to use when they leave a consultation with unanswered questions.

Conclusions: Patient use of the Internet disconnected from physician care can be detrimental. The benefits of Internet use can accrue with better design, education, and communication. More effective health Web site use can occur through improved design practices, physician and patient education, and patient-physician communication integrating patient Internet use. Better communication can be facilitated by questions on patient forms and guidelines on health Web sites. The next step is testing these hypotheses. The expected outcome is better informed patients whose Internet use is integrated into, rather than disconnected from, their medical care.

November 5, 2009 at 8:05 am Leave a comment

The Ephemeral Nature of Patient-Provider Consultations

I have seen many examples of ephemeral art: the chalk artist whose work will be washed away; the graffiti artist who uses mud instead of spray paint; and the Washington Monument’s face lift with specially designed scaffolding and draping. Ephemeral art is described as being transient and the fleeting, with no physical remnants (other than photographs).

A consultation has an ephemeral nature as well, with the physical remnants being doctor’s notes. Only rarely do patients have access to these, one exception being the OpenNotes© Project at Beth Israel Deaconess Medical Center which, according to a description, will “evaluate the impact on both patients and physicians of sharing the comments and observations made by physicians after each patient encounter.” Tom Delbanco, MD, anticipates this will improve patient recall and transform the doctor-patient relationship.

This may change what doctors write since they know that patients might read their notes. It may help patients with comprehension and recall, which have been shown to be reduced especially with a new diagnosis, and hopefully with adherence as well. There may be unanticipated results.

Certainly one of the most common ways to increase recall of a consultation is to increase the number of people there. I saw this first-hand as a patient advocate. Some of the responses, in comments and emails, to Why I Became Interested in Health Literacy, suggest ways of capturing a consultation with audio or video. There are clear advantages to this for patients who can then listen as many times as needed following the meeting, although the immediate opportunity to ask questions is lost. But, like a doctor who may write notes differently knowing they are available to the patient, a recording can change the nature of a consultation.

Knowing that OpenNotes© is new and that the other suggestions might be hard to implement, I asked some colleagues about their experiences with capturing what takes place during a consultation.

Some patients capture the instructions and the keywords. Tania Schlatter, a graphic designer, said her strategy is to “make them write it down for me. For example, my son has allergies and I made an appointment with the RN. She rattled off so much stuff I made her write it down for me. It was a messy scrawl on a bunch of stickies but that’s my reference now.”
 
Gilles Frydman, founder of ACOR.org, said that health literacy skills are no different in France than in the US but that “French doctors all the time record summaries of the conversations” for their patients. He went on to say, “They end up knowing the patients infinitely better than the average US doc using many times more technology. And the French patients are not more health literate than their US counterparts. Good health care is personal; technology should have enhanced that fact, not replaced it.”

Finally, I spoke to Paul S., who said, “The medical people I’ve worked with lately have been pretty good about writing down essential details such as over-the-counter drug names or suggested things to do or not do. Sometimes they have standard handouts that they print off on demand. That said, it would be really interesting to experience the OpenNotes process to compare what I think I got from the conversation with what the practitioner intended to convey. I don’t have the sense that I’ve missed anything from my consultations, but then that’s the point – I wouldn’t know! I have on occasion obtained a physician’s notes about tests or diagnoses, and have wished for someone to interpret the medical jargon. These are notes intended for other medical professionals, so the jargon is appropriate for that purpose. The interpretation of such notes for me might need to be, say, 3 times as many words because I know a fair bit about human biology, but it could easily be 10 or more times as many words for someone with less knowledge. And I know people for whom no amount of interpretation would be enough – they don’t want to understand anything, they just want the bottom line.”

My own recent experience with poison ivy (for the first time) was that my recall was not aided by husband, who had accompanied me to the nurse practitioner, but it helped me when I was frustrated. He repeated to me what she said: “It will get worse before it gets better” and “Nothing will make it go away faster, just reduce the symptoms.” His repetition helped me through a long two weeks.

It’s easy to reflect on the impact of changes: with the demise of Marcus Welby-like home visits, doctors could see more patients but could not see their home environments; and patients were in a much less comfortable environment, possibly impacting their health literacy skills due to the discomfort of being in a waiting room or being in an examining room in a paper gown. With all the technology available for every other aspect of our lives, and for healthcare in particular, there is no technological approach in practice that I know of that captures a consultation. It will be fascinating to see the results of OpenNotes© and mechanisms to give patients more access to health records. While ephemeral art changes the viewer’s reaction, knowing its transient nature, there seem to be few benefits to the ephemeral nature of consultations.

[Note: I just came across Amber J. Tresca’s Get the Most from Your Doctor’s Appointment, which recommends bringing paper to a doctor’s appointment to use for taking notes.]

October 29, 2009 at 10:23 pm 6 comments

Why I Became Interested in Health Literacy

Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.  

My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.

There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.

While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.

October 7, 2009 at 9:50 pm 11 comments

Is There Time to Use the Internet Before Going to the ER?

Bruce Auerbach, MD, past president of the Massachusetts Medical Society, told me that, as an emergency room physician, most of his patients don’t have time to use the Internet before seeing him. In an emergency, many people only want to get to the hospital. But some use the Internet to look up symptoms to determine if an ER visit is warranted, and cost can be a factor in making a decision about calling an ambulance. Paul R. told me about how he looked up his symptoms online when he thought he was having a heart attack.

Seven years ago, at the age of forty-six, I developed chest pains, strong enough to make me sit on the floor. With three young children asleep upstairs, I was immediately worried about whether they would grow up fatherless. I entered my symptoms into WebMD and learned enough to know I needed to call 911. Five hours later I was released from the ER – no heart attack. Since no one suggested otherwise, I left the hospital and quickly went about living life as though the entire process was nothing more than an overactive imagination.

Six months, many drinks and cigarettes later, and after chopping wood for several hours, I had difficulty breathing during an episode of the Sopranos. The first ride in the ambulance was expensive, and I didn’t want to waste the money for another Chicken Little “The sky is falling” moment of panic.

This time I did not even bother to look up my symptoms. What to do? I went outside and had a cigarette. Embarrassed by my prior “misdiagnosis”, I was reluctant to tell anyone about the fact that I felt like I was breathing through a straw pockmarked with holes. My wife called 911 when I collapsed at her feet.

This time there was no mistake. I’d had a heart attack – been there, done that, got the stent. What we learned was that I’m someone whose enzyme markers don’t appear until after about six hours, my episode earlier that year may have also been an attack, and my interpretation of the symptoms I read on WebMD may have been right. I also learned a few years later via NPR that depression often follows a heart attack and stays with you. It’s a relief to have stumbled across that information, something I wish I’d learned at the time.

What I also figured out on my own through common sense, research, exercise, and changes in lifestyle, and what was subsequently patiently and repeatedly reinforced by a brilliant and kind cardiologist at Penn is that it’s never a good idea to take twenty-five years off between workouts. I also learned that I have and will continue to have heart disease and need to treat it as such. Instead of smoking and drinking, I now run about five miles a day, watch what I eat and when I eat, and am constantly trying to find relevant literature. My doctor tells me I have become his poster child for how to proactively manage heart disease. My guess is that I can outrun and out lift most thirty-year-olds. While there’s no guarantee that I will live longer as the result of my lifestyle changes, I will live better. (P.R., personal correspondence, August 29, 2009.)

September 14, 2009 at 6:54 am Leave a comment

WebMD Gets an “A” for Swine Flu Guide and a “C” for Guide to Never Feeling Tired Again

WebMD.com is often listed as the most popular health Web site. I find their design is too busy and their content varies considerably in quality. Every time I look at WebMD for a specific purpose, I am distracted by the ads, such as a video advertisement playing next to the text I am reading – how distracting is that? Sometimes I am there for a specific purpose and find myself clicking on the slide show or provocatively-titled articles – did someone say stickiness?

Some of their content deserves an “A”. In an analysis, their Swine Flu Guide was superior to the CDC’s and other sites at providing answers to the questions likely to be on healthcare consumer’s minds.

Other content is less impressive. The most recent article that I read when I was at WebMD for a different purpose was the irresistibly-titled guide to never feeling tired again. I was surprised that the guide, subtitled “22 ways to tackle life’s biggest energy zappers”, was from Redbook Magazine since I thought WebMD wrote their own content. The first page of the four-page article was about how to “Energize Your Diet”. It recommended that I eat breakfast to feel perkier, stay hydrated, etc. While I questioned is I wanted to feel perkier, most of the advice seemed reasonable.

I had just finished teaching a course and asked one my students, Alicia Romano, a master’s candidate in the Friedman Nutrition School at Tufts University School of Medicine and a Dietetic Intern at the Frances Stern Nutrition Center, for her opinion on the article. She responded,

As far as the nutrition related pieces are concerned (generally the first page of the article) the information is pretty accurate in terms of increasing your energy throughout the day (keeping your blood sugars stable and staying hydrated).  I haven’t read much related to the omega-3’s and increasing your energy, so that was interesting.  As far as the other information was concerned, it sounded a little “fluffy” to me, to be honest.  I think all of the tips are good, but overall, I think getting enough sleep, staying hydrated, exercising, and eating healthy and frequently throughout the day are the major keys to energy.  I was not too happy to see that they reviewed some of the new “products” at the end.  I have never even heard of half of those, and I’m sure most readers haven’t either.  If anything they are going to be informing readers of these products that they shouldn’t even try.  Their reviews weren’t on the efficacy either, just a simple quotation. I think the title is a little deceiving as well, but then again, it is from a magazine (Redbook).  I was actually surprised to see they would post a magazine article on WebMD (Personal correspondence, A.R, August 11, 2009).

I appreciate Alicia’s assessment and, based on her analysis and mine, I give the article a “C”. Some good suggestions but only a few references, no links, an introduction with only the merest hint of the content, and no conclusions or resources for further exploration. While WebMD provides many mechanisms to share an article, there are none to comment on or rate the accuracy or usefulness of an article so neither Alicia or I could post our feedback. I looked for the original Redbook article and found that while it seemed essentially the same, although split onto more pages, the links to useful sites such as the American Dietetic Association (ADA) were removed in the WebMD version. Can I lower the “C” to a “C-“?

August 29, 2009 at 11:37 pm 1 comment

Strategies to Find Reliable – and Avoid Wacky – Health Web Sites

My friend Jan, a breast cancer survivor, told me about her use of complementary and alternative medicine (CAM) Web sites and how she has developed a “wackiness filter” to determine which to pursue beyond an initial glance. Interested in learning if wackiness filters are common, I posted a question in twitter about what are the attributes of a Web site that makes you convinced it is “wacky” and what are the warning signals to you? I further asked if this was more of an issue with CAM.

I heard from S.R., who said, “I am in good health and have never had any health challenges. So, I am not sure how useful my strategy is. It’s all talk until then, no?” She looks for “wellness as opposed to disease.” Two of her strategies are reading books before going online and using the resources provided by graduate programs in CAM.

I am fairly receptive to alternative therapies. Being half (East) Indian helps me appreciate them more easily perhaps. But I have a strong Western bias for controlled studies and scientific evidence.

Favourite med resource is internet, but it is just one of the tools. I use my GP to confirm or point me in another direction. Hardly ever rely on her exclusively any more (she is overworked). I also have an old CPS (drug directory) — paper copy. I ask all my friends for their experiences, especially a friend of mine who is a Buddhist and extraordinarily accepting.

I don’t have the skill to understand random control studies; but tend to be cynical b/c of how they are funded. This means I tend to rely on people who interpret them for me like T. Colin Campbell (author of China Study). He is an especially good source because he too tries to integrate east and west, with a western sensibility.

Strategy is always to rely on corroboration – triangulation, isn’t that what researcher’s call it?

If a pharmaceutical company funds a resource, I am ten times more skeptical, with good reason.

For alternative therapies, I tend to read books first, then go to the web from there. Maybe the slower reading, and complete thoughts help me understand where I would be hesitant online. Alternative medicine does not spring from nowhere, and it is not difficult to figure out who is flaky and who speaks with authority borne from wisdom (unlike western medicine, imho). I often email authors; I love living in a world where this is possible.

I have looked at graduate programs in alternative medicine. They understand the western mind and what it takes to reassure (if only to get funding!). I have followed their resource links in the past, and liked what I found.

I never use Google to search for symptoms. The results are a mess.

My undergrad degree is in Biochemistry, and I am in the health care industry. So I am not uncomfortable with the lingo.

I try to pay a lot of attention to my pain signals from my body. I am not great at this, but I’m learning. (Personal correspondence, S.R., May 10, 2009)

July 31, 2009 at 10:12 pm 1 comment

Empathy Without Communication Is Mind Reading

Pam Ressler, RN, BSN, HN-BC, and I discussed how healthcare professionals, family, and friends use empathy vs. sympathy to respond to someone who is ill when I told her about my blog post. Pam had insights based on both professional and personal experiences. She told me about Empathy vs. Emotional Reasoning in Nursing, in Advance for Nurses, which Pam posted a blog entry about. The article defines empathy and emotional reasoning as:

Empathy is defined as the ability to understand another person’s circumstances, point of view, thoughts and feelings. When experiencing empathy, one should be able to understand someone else’s internal experiences.

Emotional reasoning is defined as ‘a cognitive error whereby a person who is nervous or anxious resorts to emotional reactions to determine a course of action.’

The article advises “empathy without communication is mind reading. Listen to patients; provide education, but don’t give advice.”

Pam also mentioned a study about doctors and empathic communication that “sheds light on the types of situations and remarks that physicians should recognize as opportunities to express understanding and support… empathic responses can be brief and do not make consultations longer.”

July 16, 2009 at 10:10 pm Leave a comment

Blogging for Fun and Profit – Or at Least for Validation and Insights

I had a great discussion today with a colleague about her insights on What’s the Right Thing to Say to Someone Who Is Ill? based on her professional and personal experiences. She validated my ideas and inspired me to take them in new directions. It also reminded me why I like to blog.  Recently I was a featured faculty blogger on the Tufts University home page and said, “As an academic, you have endless ideas but you don’t always have the time to pursue them. What I find the blog is great for is taking some of those ideas, fleshing them out, and posting them… Not only are they are there to go back to when time allows, but I get feedback from people who read my blog and write comments.”

July 8, 2009 at 10:10 pm 1 comment

What’s the Right Thing to Say to Someone Who Is Ill?

When I ran into Paul S. not knowing he had cancer, I barely recognized him and struggled with what to say. “What happened?” didn’t seem appropriate, although it was my initial reaction. I believe I said, “I barely recognized you,” which was true. I’ve been in many situations where I wasn’t sure what to say to someone who was ill or in distress; I wanted to be supportive but wasn’t sure what would be perceived as helpful.

I’ve been on the receiving end too; most recently when my father died and I remembering saying to myself many times, “I know he/she means well” when their words did not comfort me. I only once curtailed a conversation, when, within minutes after hearing about his death, a friend started telling me a long, involved story about a mutual friend’s father. I stopped her, said that I knew she meant to be supportive but I could not listen right now, and walked away.

People so often mean well but don’t know what to say. I asked Paul S. what he found helpful and he thought it was very dependent on personality. He describes himself as “a very logical, rational, controlled-emotions kind of person, so I hear comments such as you made as empathetic or at worst neutral. ‘Wow, Paul, you look like crap!’ ‘Darn right – I feel like crap.’ I actually like that.  But I have known other people who are really bothered by exactly that type of observation. They want sympathy and understanding, but not observation, if you get my distinction. A worried LOOK, and an inquiry about how they are feeling, seems to be what they need. Which I value too. So I guess that’s the safe thing to do.”

When I told Paul about my experience with the friend who I walked away from, he understood my reaction and said, “What I did not want to hear is what you heard: somebody else’s story, not really relevant, and depressing. That’s indicative of a person who isn’t able to listen.” Of course, I was the one who was actually there and don’t think that the person couldn’t listen, but didn’t know what to say and felt moved to say something. The opportunities for mismatch between what one person says and the other person needs are abundant!

The difficulties are compounded by the distinction between advice and information, as Paul articulated, “The other thing I did not want to hear is advice about what I should do or not do – I’m getting the best care available, and I’m pretty competent to take care of myself. But then unsolicited advice is almost never welcome, right? What I DID appreciate, however, was INFORMATION. I didn’t include this in my story, but when I shared my situation with a friend at church, he reported that his mother had experienced something similar and had done extensive research on the web regarding Cisplatin and hearing loss. At my request, he contacted his mother who then e-mailed me several specific web links to good information sites. THAT interaction spurred me to do more research than I had done before.”

When I ran into Paul, my immediate thought was not to offer meals or rides, but sometimes this is the most helpful thing one can say. Paul agrees,”The other thing that was nice, though I didn’t really need it, was offers of help, such as rides to chemo or offers to bring food or visit. I think it’s my personal style to not want or need much of that – I was able to drive the whole time, and didn’t want to put somebody to a lot of trouble; my taste buds and my appetite were shot, plus my partner was taking care of my food needs; and I just wanted to be left alone to vegetate in front of the TV when I felt bad, and not feel like I needed to keep up a conversation or be nice. But I’ve known other people – my (now former) partner is one – who in a similar situation would want almost around-theclock company and help. So it’s good to ask and offer help, as long as you’re prepared to accept ‘thanks, but no thanks’.”

While Paul doesn’t think he is typical, it may be that no one really is in times of need. Which, of course, helps one to appreciate the people who do say or offer exactly what you need at that moment.
Paul also deal with the the common problem of how to keep people informed through email, which is a way of reaching out to people as well and a way of avoiding having the same conversation repeatedly. Paul recounted his experience, “On a closely related topic, something I did that had a surprising and wonderful result: When I entered the hospital, I did a broadcast e-mail to a ton of friends, advising them of the immediate situation and inviting them to opt in to periodic e-mail updates. More than 60 people opted in! Sending those broadcasts helped me feel connected, and I often got lots of replies. But the most surprising thing that kept happening was that they THANKED me for keeping them posted. That blew me away. It still does a year later. True friends WANT to know, want to share the burden. Too many people feel ashamed or embarrassed or unimportant, and they miss this incredible opportunity to strengthen relationships by sharing their situations. Sure, there are folks who complain too much, so it can go the wrong way. My messages were factual and hopeful, even when I felt like crap, and that seemed to inspire a lot of people, which in turn made me feel that something good was coming out of this not-so-good time. I don’t know whether this fits into what you’re trying to do, but I would sure encourage people who find themselves in similar situations to reach out and stay in touch.” There are Web sites for exactly this purpose, but email is certainly simple and, in this case, effective. There are also many people who blog their illness; one of the most moving that I read was NPR journalist Leroy Siever’s My Cancer.

July 7, 2009 at 9:19 pm 3 comments

How Useful Are Online Health Quizzes?

In How useful are online health quizzes? Consumer Reports Health.org, June 2009, I say, “My biggest objection to [quizzes] is how they can be misused.” I go on to say that “Many people who take such quizzes do not necessarily know how to put the test and results in perspective.” Of course they can be fun too, but many are dealing with serious issues in a frivolous way and are not effective screening tools.

Have you ever taken one and with what result?

July 6, 2009 at 8:17 pm Leave a comment

Health Stories: “The Price I Must Pay for Being Cured of My Tumor”

I almost didn’t recognize Paul S. when I saw him with no hair looking rather gaunt. He told me about his cancer and about his experiences with treatment, which included side effects during chemotherapy of potentially permanent hearing loss and numbness in his hands and feet. Paul felt like he had to do his own research because he was not “getting satisfactory answers from my treatment provider”. Here is his story:

I was diagnosed with a germ cell tumor and endured nine weeks of chemotherapy. I was advised of the side effects of the three chemo drugs in a very routine way, emphasizing the nausea, but not dwelling on the other effects, and not really mentioning that some side effects could be permanent.

One of the three drugs was Cisplatin (cisplatinum), a complex compound that includes platinum. During the first round of chemo, I experienced a high-frequency hearing loss. While I could still function in terms of hearing and speaking to other people, I was very aware of the loss in listening to music and even the normal background of everyday sounds – sounds were not as crisp as they had been.

I consulted my oncologists, one of whom said that this was a known side effect of Cicplatin, and that most people recovered their hearing when the drug therapy ended. I asked what he meant by “most”. He replied, “About 70 percent.” Now 70 percent may be “most” to him, but it sure isn’t to me.

From the beginning of my illness, I had started broadcasting news of my illness and treatment via e-mail to interested friends – an opt-in list after the first broadcast. One of the friends replied to my news of hearing loss with research and experience that his mother had acquired in dealing with a similar issue. This spurred me to do some investigation of my own, and it wasn’t hard to find lots of information on Cisplatin with a simple Google search.

What I learned is that Cicplatinhas been used for chemotherapy treatment for several decades, that the hearing loss side effect has been well known for most of that time, and that somewhat extensive research has been done on the nature of the effect and on ways to protect the body from the side effect while still getting tumor-reducing effects from the drug. The drug continues to be used because it has proven highly effective in killing tumor cells with otherwise not-too-awful side effects.

The bottom line is that there is no known way to avoid the hearing loss while still getting the tumor-reducing effect. The hearing loss effect *is* dose-dependent. Armed with this information, I insisted what my oncologist reduce the dose of this drug, and after discussion of the tradoffs, we reduced the dose by 15% for the second and third cycles of chemotherapy.

My hearing recovered somewhat toward the end of the first cycle. Each cycle consisted of five days of Cisplatin and two other drugs, followed by two weeks of one-day-per-week of just one of the drugs (not Cisplatin). So I got Cicplatin for five days, then was off of it for two weeks – one cycle. The loss was somewhat less during the second cycle, but also less recovery, and similarly for the third cycle.

At this point I have what is considered to be a permanent high-frequency hearing loss, accompanied (as expected) by mild ringing (tinitus). It apparently is the price I must pay for being cured of my tumor. I am angry about the loss, but have no target for my anger.

Chemo ended in mid April. During treatment I went through a spell of peripheral neuropathy- numbness in my hands and feet, another known side effect of Cicplatin. The numbness lessened over time, and shortly after chemo ended, I had some residual numbness in my feet but none in my hands. However, in the last two weeks, the numbness has worsened in my feet and has returned to my hands. My oncologist is at a loss to explain why the neuropathy should suddenly worsen weeks after I stopped receiving the drug that supposedly caused it. So I will be continuing my own research since I am not (so far) getting satisfactory answers from my treatment provider.

That’s the story so far. My tumor has gotten substantially smaller, almost to the vanishing point (according to PET scans), but I am not yet officially in remission. The numbness is not painful, but is quite annoying, and it’s worrisome because it shouldn’t be getting worse now. (P.S., private correspondence, 7/31/08).

Paul S. is doing well. As an update he said:

My health is good now. As of the last CT scan in January, there was nothing left of the tumor but scar tissue. I have another scan a week from now as a precaution.

My hearing may have improved slightly – the tinnitus is less, and I don’t get the distortion with loud sounds that I was getting. As for frequency response, well, at my age, there is going to be some high-frequency loss anyway. I know there is still a reduction in high frequencies, but I can’t say for sure at this point whether it is age or chemo. (P.S., private correspondence, 7/6/09).

I told Paul I hope he wasn’t offended that I called him gaunt and he said, “I’m sure I did look ‘gaunt’ when you saw me then – I certainly FELT gaunt.” One so often struggles with what is the right thing to say or how to hide the surprise, or even shock, one feels when seeing someone who looks very different than the last time you saw him or her.

July 1, 2009 at 5:49 pm 9 comments

Health Stories: Asking the Doctor a Question Armed with the Answer

When I told Avi, an editor in Dallas, about my health research, he responded, “It’s coincidental that I had an Internet health moment this week.” Avi had switched to a generic SSRI anti-depressant from a name-brand and was feeling poorly.

The Web sites Avi used were the FDA, a mental-health news clearinghouse/portal, and, a respected online forum for patients using anti-depressants. He went on to say that this “online research showed a high probability that the nasty symptoms I’ve experienced the last couple of weeks are due to my switching from a name-brand drug to a generic version.”

Avi continued, “With the Web information in hand, I talked to my doc and the pharmacist, went back to my old med, and, today, I’m feeling much, much better. Did I need the Web for this? Not necessarily; a phone call to my doc may have done the same thing. What the Web did was immediately confirm the strong probability between the generic med and my symptoms, which allowed me to start the chain of events necessary to fix the problem.”
 
I asked Avi why he turned to the Web first. He said, “It’s a convenient, fast filter/information source, and I trust my Web-research skills. Moreover, I didn’t stop after doing my surfing; it was just a first pass at the information available before I called my doc, to whom I didn’t say, ‘Hey, all these blokes out on the Web are going through hell with this generic, get me off of this stuff!’ Rather, I first had a discussion with my pharmacist to find out if she had had similar feedback from her patients on the same drug. Then, with information from three serious, medically respected Web sites and my pharmacist’s comments in hand, I called my doc and simply asked him if there could be a causal link between my switch to the generic and my symptoms. If he had said no, I would have cited the evidence I had in hand that appeared to suggest a link. But, he didn’t, so I didn’t have to go beyond the initial question.”

Avi concluded, “So, there’s my story. Not very dramatic.” But it exemplifies both the empowered healthcare consumer who trusted his information literacy skills, and also the lack of disclosure about the use of the Internet that so frequently occurs between patients and doctors. (A.G., private correspondence, 8/5/08 and 8/6/08).

June 28, 2009 at 10:57 pm 2 comments

Finding Useful H1N1 Information Online

I was interviewed for Healthcare IT News about how H1N1 information is disseminated to the public. While the news media was providing constant updates about outbreaks, my interest was in how healthcare consumers get useful information. I sent the author, Molly Merrill, a quick analysis of some of the sources of information I had used.

The CDC is known and established as the most respected source of information in this country and comes up as one of the first results in most searches on “swine flu” or “H1N1”. Their site is well-branded and is clearly marked with the last updates. However the site itself is busy with sidebars and lots of related information, while arguably the most important information for most healthcare consumers is in a box near the bottom, “What You Can Do to Stay Healthy”. What is likely to be prevalent on most people’s minds doesn’t appear at all here. If you click on “H1N1 Flu & You” near the bottom, a Q&A format addresses the questions people are likely to have, such as “What are the signs and symptoms of this virus in people?” In addition, the CDC has done a great job of using social media, such as twitter, for updates.
 
While I applaud the Massachusetts Department of Public Healthfor providing material in 14 languages, the page itself is basically a collection of links to PDFs. The documents I read are are well-written but some are not even what the links say; for instance, under “Resources if You Are Sick or Think You Are Sick”, the Flu Symptoms Checklist was designed for a parent to determine if a child should be kept home from school or brought to the doctor.
 
WebMD’s Swine Flu Centerdoes a better job of providing immediately visible and useful information through clearly labeled links to answer common questions such as “Swine Flu and Travel”. Due to poor health literacy skills and the fears that have been played upon by the media frenzy, health Web sites should provide very specific information that addresses the concerns uppermost on a healthcare consumer’s mind and it should take minimal scrolling to find it, as is the case here. 
 
Finally, my town, Lexington, MA, has done a great job of addressing parental concerns through emails. The school department Web site provides a parent resource with guidelines about how to talk to your child, a huge problem when children hear a lot on the media and from their friends and need to hear factual age-appropriate information from their parents. And, when one of my sons was out sick for a few days, I received a phone call from the school nurse!

June 9, 2009 at 9:43 pm 4 comments

The Pitfalls of Getting Medical Information on the Internet

I was interviewed on the radio show, Something You Should Know, about how patients use the Internet for health and what are some of the drawbacks. You can listen or read the transcript. I was also interviewed for an article in Elle Canada about Cyberchondria.

May 29, 2009 at 3:36 am Leave a comment

Web Strategies for Health Communication

I am teaching a new course, Web Strategies for Health Communication, and for it I am developing a number of case studies about the Web strategies healthcare organizations develop and how the strategies evolve. Families for Depression Awareness and  Roadback.org are almost done. They share the problem of too few people (paid or volunteer) with too much to do. Ritu Gill, Staff Member with Families for Depression Awareness, said, “We started a Facebook page hoping it would bring more people to our Web site but we don’t think it’s working.”  They use twitter but have 1 update so far.

The next cases are TuDiabetes.com, WeightWatchers.com, Livestrong.org, CureTogether.com, Association of Cancer Online Resources (ACOR), healthfinder.gov, and ABC News Health. Of course there’s WebMD.com. Please give me suggestions for other organizations, especially ones with particularly creative uses of the Web.

May 23, 2009 at 8:14 am 1 comment

What Your Patients Are Doing Online and Why You Should Engage Them as Partners in Care

I wrote the cover story of Tufts Medicine, Winter 2009, with Dr. Janey Pratt, a surgeon at Mass. General Hospital. The article looks at patient use of the Internet from the physician perspective. The article concludes:

Online resources can help your patients become better educated about medical topics, more confident and comfortable with you and more compliant with treatment. As Anthony Schlaff, director of the M.P.H. program at [Tufts University School of Medicine], notes, “At its best, the Internet is one more tool in the partnership between a physician and patient.” [Bruce] Auerbach, the Massachusetts Medical Society president, couldn’t agree more. “Given that patients are going online,” he says, “the best thing to do is engage them as partners in care.”

The full article can be read at Dr. Google: Your Patients, the Internet, and You.

February 26, 2009 at 7:30 am 2 comments

The Doctor as the Second Opinion and the Internet as the First

In “The Doctor as the Second Opinion and the Internet as the First,” I describe the increasing common phenomenon of people using the Internet before seeing their doctor:

People who use the Internet for health information often obtain their first opinion that way, and then, if they go to a doctor, the doctor’s advice is relegated to the second opinion. Using the Internet, or Dr. Google, as a first opinion can be problematic due to misinformation, misinterpretation of valid information, and the fears that can arise due to lack of medical knowledge, inexperience, and limited perspectives. When patients do visit their doctor for a second opinion, some do not disclose the fact they already received their first opinion and often their doctors do not ask. The result is that patients may suffer needlessly if their fears, concerns, misunderstandings, and misinterpretations are not addressed by the healthcare providers with the expertise and skills to assist them. A pernicious disconnect exists between many patients who use the Internet for health information and the medical professionals who care for them. The medical profession can alleviate this disconnect by taking the lead in establishing guidelines for systematically talking to patients about, and guiding, their Internet research. Human-computer interaction professionals can collaborate with the medical community in ensuring credible health Web sites become the gold standard that patients use to achieve better health.

I appreciate any feedback, insights, or experiences.

February 16, 2009 at 1:27 am 15 comments

Health Stories: Successful Weight Loss Aided by Online Tools

WeightWatchers.com is an example of a thriving, well-segmented online health community. The segmentation has been applied to their success stories as well, making it easy to locate stories that are likely to resonate. With both the discussion forums and stories, segmentation works because of the number of contributions. WeightWatchers.com also seemingly does what many consumer websites have failed at: charges for parts of the website. They employ a tiered approach to registration and payment: most of the site is available to someone who is browsing; contributing requires registration; and using their online tools requires paying fees. While I have used the website often as an example in my classes, I had never tried the online tools and was interested when I met someone who had not only used them, but successfully lost weight.

When I joined Weight Watchers in May of 2007, I was really pleased that they were offering a promotional rate of $39 per month for unlimited meeting attendance as well as unlimited use of their “member website” which definitely has more to offer than their “free site” for lifetime members.  I had tried to lose weight earlier in the year by logging on to “Spark People” which I believe is supported by a government agency.  I just didn’t find it gave me the format that I needed even though it has some of the same features as weight watchers like keeping a journal of what you eat.

The pay site for weight watchers reinforced the simple ideas of weight watchers and I just put my faith in the “flex program” of counting points.  If I couldn’t make it to a in person meeting on a given week, I found a lot of the same principles reinforced on the website, and all I seemed to need was a “weekly mantra” to keep me on track for the week.  The pay site also has a place where you can chart your progress, and weeks that I would go to a meeting I would “log in” my current weight, and it felt great to have the little chart appear and show my weight going down.  Another thing that I found really useful on the pay website was the feature where I could input my own recipes and find their point value.  I like the flex plan because you can eat your own food, and I like to cook, so I could use my old recipes and still stay on the plan and I would KNOW what the point value was.  The pay website also had point values for different restaurant meals and some neat chat rooms.  I definitely logged on frequently while I was in the “losing phase” of weight watchers, and I found it motivated me when I felt a little lost.

I hit my goal weight after about 14 weeks ( 17 pounds), and I paid for a total of 5 months and became a lifetime member almost exactly a year ago.  I go to the “free website,” but I don’t find it quite as interesting or motivating, but I’ve been “maintaining” so I guess I have the tools that I need (A.M., private correspondence, 10/13/08).

February 2, 2009 at 7:37 pm 44 comments

Cereal and the Internet or Can’t I Eat My Breakfast without Going Online?

CB065151The four breakfast cereal boxes sitting on my kitchen counter all have urls to promote healthy eating. Not having noticed that before, I checked if all food packing has urls now, and discovered that many do, but they are primarily, in my small sampling, to enter contests, get recipes, or go to the corporate website. While some of the cereal packages similarly have urls for recipes and the like as well, what I was interested in was the healthy eating information.

Starting with my personal favorite, the Quaker Oats oatmeal package told me that it is one of the “over 250 smart choices made easy from Pepsi Co.” at smartspot.com. There I learned about “energy balance”, why eating breakfast is healthy, and found a link to The Breakfast Research Institute, which is sponsored by Quaker and Tropicana. There, the Breakfast Calculator told me that my breakfast of choice, while higher in calories than a doughnut and cup of coffee, is also significantly more nutritious and brings me closer to meeting my daily recommended nutrition requirements. I could compare my breakfast to their pre-set breakfasts and even tweak mine to increase the nutritional value. And, for my breakfast entertainment, there were podcasts!

After that, I barely wanted to check the other sites out but did out of curiosity. Corn Chex had wholegrainnation.com, where I took a multiple choice quiz about whole grains. Honey Nut Cheerios offered eatbetteramerica.com (which wholegrainnation.com is part of), where I found lots of recipes, a discussion forum, a blog, and more. The blog entries I read all linked to “healthified” recipes in which some ingredients are replaced with alternatives so the result is “as yummy” but “better-for-you”. Finally, Raisin Bran has kelloggsnutrition.com, where “master-moms” taught me how to “snacktivate”.

If I was creating a website that a cereal box led to, based on my perusal of these sites, I would:

  • think of common misspellings for my url and buy the domains – typing in kelloggnutrition.com with one “g”, as I first did, should still lead to the right website
  • make sure that my discussion forums were not stale (no pun intended) – topics from over a month ago would not be tagged as new
  • determine if there is a pedagogical or branding advantage to coining my own terms, such as “healthified” and “snacktivate”
  • use the simplicity of cereal – it is generally eaten for breakfast in a bowl with milk – as a guiding principle rather than developing a complex or overwhelming site
  • most of all, I would promote healthy eating for breakfast through advice that could be immediately used

The sites I looked at collectively offered advice on all aspects of diet and fitness, not just breakfast, through articles, tests, tools, forums, podcasts, and ask the expert, oriented primarily to parents but with sections for professionals, educators, and children. But what is the likelihood that someone will peruse this abundance of  information and implement significant lifestyle changes before rushing off to school or work?

Ultimately, I preferred the Breakfast Research Institute. It just focused on breakfast. It was the only site that provided me with immediately useful and actionable advice: that adding a piece of fruit to my current breakfast of oatmeal would give me a healthier start to my day. And it confirmed what I already knew, although affirmation is always beneficial: that my current breakfast is far superior nutritionally to coffee and a doughnut.

January 11, 2009 at 11:44 pm 1 comment

Internet diagnoses: Trust them or toss them?

It is natural to turn to Google for health concerns if you are already using it for just about everything else. But the consequences of using poor quality or misleading information are much greater than, say, choosing a movie to watch. I wrote about using the Internet for diagnosing an illness in the Lexington Minuteman, which also appeared in many other, mostly small town, newspapers. My primary goal is to help people improve their health literacy.

December 1, 2008 at 8:35 pm Leave a comment

Are We Experiencing a Flu Epidemic and Other Problems With Search Terms

1112-biz-webflu-190Trends in online behavior are fascinating. Bill Tancer, in Click, analyzes why fewer porn sites are accessed on Thanksgiving and other aspects of what people do online. When people are sick, they seek health information online, with the Internet surpassing doctors as a source of health information for the first time, according to Manhattan Research. It is not surprising that many people turn to the Internet to learn about the symptoms of or diagnose a case of influenza.

When all these ill people do their health searches, Google Flu Trends uses their data for early detection of an outbreak, having found “a very close relationship between the frequency of these search queries and the number of people who are experiencing flu-like symptoms each week.” This “fruitful marriage of mob behavior and medicine” has been validated with data from Yahoo as well, according to the New York Times.

They must have found that enough people do Google searches on reasonable terms for Google Flu Trends to detect an outbreak of the flu. While it is heartening to think that the flu and other diseases can be detected in this way (remember SARS?), I am concerned about relying too heavily upon this means of detection because there are many other things to do when you think you have the flu and even if you do a Google search it doesn’t mean you have the flu.

1) What people do when they have flu symptoms:

  • Call Mom (did Manhattan Research rank Mom with the Internet and doctors as as a source of health information?)
  • Email Mom
  • IM a friend
  • Tweet many friends (while checking out the CDC’s flu prevention tips)
  • Post a question in the countless sites with discussion forums or Q&A
  • Look on WebMD, Mayo Clinic, or another health website
  • Use a specialized medical search engines
  • See a doctor

I assume that all the data resulting from these activities is not tracked by Google Flu Trends. The data that is included is from the use of Google. Which brings us to the second point, that of the dangers of extrapolating too much from search terms.

2) Search terms are not accurate indicators of disease because:

  • False-positives can occur. There have undoubtedly been many searches on “flu” to learn more about Google Flu Trends yet this does not mean we are currently experiencing a flu epidemic.
  • Only a doctor knows for certain. People with a cold or a fever from another cause may use the same terms Google associates with the flu. In fact, they may think they have the flu.
  • People with flu symptoms may search terms or creative misspellings Google isn’t tracking.

Many successful technologies are used in ways other than the originally intended ones and, even if this one doesn’t help the CDC, there is entertainment: “For those of you with the dichotomous penchant for tracking disasters like hurricanes, Google Flu Tracker will be great fun.” For humor, check out the Ads by Google accompanying some of the posts about this news; I saw orange juice advertised to “fight those nasty cold and flu bugs” as well as information on “why flu shots may or may not be advised for you.” Search terms are useful in oh so many ways.

November 13, 2008 at 7:53 am 2 comments

Mary Morgan and Adding “Oomph” to Dr. Spock’s Baby and Child Care Online

I had the pleasure to talk today to Mary Morgan, who is the widow of Dr. Benjamin Spock. She founded the Dr. Spock Company, which built drspock.com after his death. She told me that during “the dot com rage” she was approached by many people to do a Pediatric site which would emphasis child development and include a new section on OB/GYN. Ms. Morgan’s primary impetus was to provide a tool to help parents raise their children in conjunction with  the newly revised Dr. Spock’s Baby and Child Care. The site offers an order of magnitude more information than the book, with different ways of delivery, including experts on child development, a feature that is not common on Pediatric sites.

Ms. Morgan is interested in building a new and updated Pediatric site in conjunction with these medical experts. Her goal is to have a site that is easier to revise and update and has the “oomph it needs”. She will be guest lecturing to my Online Health Communities class and, as one of their class projects, they will work on the design of the new site.

If you use the book or the site, what online features could help you be a better or more knowledgeable parent?

October 13, 2008 at 6:53 am 3 comments

How Many People Does It Take to Make a Success: A Look at Qwitter

In Here Comes Everybody: The Power of Organizing Without Organizations, Clay Shirky discusses why some social networks stick while others collapse. Wikipedia is one of his examples of a success. When I looked at Qwitter, my first reaction was it was a failure because there were only 614 people using it. Qwitter, a cleverly-named initiative from TobaccoFreeFlorida that harnesses Twitter, is promoted as “a social tool designed to help you quit smoking” through keeping track of daily cigarettes and feelings about smoking. They also provide tips. That 614 people signed up for Qwitter seems low given that 750 people sign up for Twitter daily and 3 million people use it.

My initial reaction was reinforced by looking at how Qwitter was used, since many of the users had started in April (due to launch publicity, I speculated) and had stopped using it after a few – or just one – use. This is notable given that many Twitter users tweet many times daily. Looking through Qwitter users, I finally found a recent and more sustained user who tweeted pretty regularly for the past month, although there didn’t seem to be any cessation taking place.

My Qwitter perusal indicates that most users do not stop smoking. However, there is no indication who the 614 people are – people who are trying yet another approach to quit smoking or people who were lured by an innovative technological approach and go on to try another. If even a small number of people stop smoking because of Qwitter, it may well be considered a success, especially since the cost of creating it should have been low since it was built on Twitter which is free.

September 28, 2008 at 8:17 am 5 comments

How Much Chocolate Should Anyone Eat and How Much Should Anyone Rely on Health Forum Advice

I love chocolate but have never considered that the amount I eat is unhealthy. In fact, how common is it to eat chocolate – or any other food – to the point of being worried? In the case of white_sakura (someone’s user id), she (I believe the people posting here are female) said in a forum, “I was wondering if it is too much to have about 30% of my calorie allowance to go toward chocolate.” The forum, part of calorie-count, from About.com Health, is a site for people who are concerned about weight loss and nutrition.

In response to her post, w_s, as someone nicknamed her, received 6 responses in 2 days and also provided clarification a few times. It was quite a lively discussion compared to some forums, where questions go permanently unanswered. In the ensuing discussion, one person told w_s what seemed like practical advice to me: “30% would be too much. Chocolate, although lovely, is just sugar and fat… the real downside is that you’d be trying to get all your nutrition from the remaining 70% of your diet.” Another agreed, “30% is waayyyy too high.” Someone else differed in her view, “If it fits in your cals and you feel good, go for it!”

Other advice was to try savoring her chocolate – which w_s was already doing, taking an hour to eat 2 squares. Wow, she must not have a busy schedule. I suppose you could savor the taste of chocolate for hours as long as you don’t work in a call center where you have to answer the phone and talk to people. Or any other occupation where you have to talk to people. Or touch anything. That doesn’t leave many jobs.

A side discussion had to do with the reported health benefits of dark chocolate, including a link to an article in WebMD, which reports on a study and concludes that a balanced diet and exercise is the key to a healthy heart. The same person wrote about her own daily chocolate consumption, which “keeps me from overindulging in some other not-so-good-for-me things”. Did she mean licorice, Pringles, or more serious vices?

Many people are more comfortable seeking peer advice online, often more open anonymously than they would be with their doctor – or a close friend. (Actually, that made me wonder if w_s has a spouse or roommate, and, if so, does she eat in front of him or her?) It’s also heartwarming that people respond, and most empathically. No one called w_s obsessive or addicted or recommended that she take a leap into Willy Wonka’s river of chocolate. However, only two responses seemed medically sound, those saying that 30% is too high. No one suggested making an appointment with a doctor or nutritionist or following a plan for a nutritionally-balanced diet.

There was only one mention of a specific product in a response, a type of Lindt chocolate. After reading that I noticed that the banner ad was for car insurance and the sidebar ad was for flights to London – now Switzerland I could understand! More relevant to the discussion topic, the banner at the bottom was a meter for diabetics. That ad crystallized the issue for me: poor nutrition can have severe consequences. My advice to w_s: getting anonymous online advice is great but this is a case where professional medical advice could add healthy years to your life.

August 19, 2008 at 1:26 pm 12 comments

The Dark Knight Showcases Gotham City’s Health Problems

Just as the rooftop spotlight illuminated the sky with a bat, The Dark Knight illuminates the health problems of Gotham City. Would The Joker unscarred have been a different person? (And which version of how he got his scars was true?)

The policewoman who sold out to the joker, Detective Ramirez, did so because her mother was hospitalized and she couldn’t afford the bills.  For that matter, being a patient in a Gotham City hospital is not such a safe proposition. Then there was Batman’s stitching of the dog bite on his arm, aided by his trusty Alfred. And the severe burns on half of Harvey Dent’s face, for which he refused pain killers or skin grafts.

Mental health issues were abundant, including Harvey Dent’s interrogation of a paranoid schizophrenic that Batman stopped. In real life, Heath Ledger, who played The Joker in a eerily psychotic way, died from an “accidental overdose of the anti-anxiety agents Valium and Xanax, the sleep aids Restoril and Unisom, and the painkillers OxyContin and hydrocodone (the active ingredient in Vicodin)”.

The highest drama is created by life or death situations. “Pop culture, such as the Batman comics and movies, provides an opportunity to think philosophically about issues and topics that parallel the real world.” Avoid the health problems of Gotham City if you can.

July 27, 2008 at 10:28 pm 1 comment

Ten Things You Can Do in Ten Minutes To Be a More Connected Health Professional

You need a break and, instead of heading to the coffee pot, take 10 minutes to follow one of these 10 suggestions to be more connected and better at communicating health messages:

  1. Become a social networker: Take your pick, LinkedIn, Facebook, Plaxo, … Create a profile, including a picture, and invite some colleagues. If you search, you’ll find many of them already there. (You can connect to me!)
  2. Try twitter: Join twitter and try out micro-blogging. Invite some colleagues or find some who are already there. Try following me (I am a sporadic user but I post health links occasionally) or try BBC Health.
  3. Read a blog: Health blogs range from very professional and constantly updated to navel-gazing ones that were last posted in over a year ago. I recommend you start with Well, Tara Parker-Pope’s health blog at the New York Times, The Wall Street Journal’s Health Blog, Consumer Report’s Health Blog, or Health 2.0. For contrast, try Leroy Sievers’ NPR blog or one of WebMD’s blogs. Not feeling overwhelmed yet? Do a search on “health blogs” or even “health blog directories” and I guarantee you will be suffering from information overload. Now comment on a blog. Not only do bloggers like to know you read a post, but you undoubtedly have something to contribute. After all, if you wrote a blog post, wouldn’t you like to know what your readers think? Be a producer, not just a consumer!
  4. Create a blog: You knew this was coming! But only do it if you can commit to posting regularly. If you think you can only post sporadically, start one with a few colleagues. I recommend wordpress but there are many other blogging tools.
  5. Create a community: try ning and set up an online community about your health specialty. First search to see what else is there. If you find some, check to see how many members they have and the date of the latest site activity.
  6. Do a search on a health topic: Select a topic of interest to you professionally and do a search. Look at the number of results first. Next look to see if there are sponsored links. Finally, look at the first 10 results and see if you think they represent your topic well. If your work isn’t there, come up with a plan for greater visibility. (If you don’t know what SEO stands for, then at least become conversant with it.)
  7. Learn how information spreads: Post an article you like (or wrote) to digg, mixx, StumbleUpon, or reddit. Or post a picture to Flickr or a video to YouTube. If you aren’t ready to post, then participate by commenting on or voting on it.
  8. Use Wikipedia: Have you read Wikipedia’s entry on your health specialty? Read it and enhance it. If there isn’t one there, create it. There are other wikis out there too – for instance, you might want to add your name to the list of Health 2.0 people – and see who else is on it.
  9. Connect with a person: Email a colleague about something you read or are thinking about. Or pick up the phone. Or even invite someone you’ve been meaning to talk to out for coffee. (See, you get your coffee break after all.)
  10. Just for fun: What would it take for you to be the first health specialist on TechCult’s Top 100 Web Celebrities list – besides a blog (see #4) and funky hair?

Finally, think of your own idea for a 10 minute activity that can improve your health communication skills and post it as a comment below so others can benefit.

Thanks to the students in Emerson College’s Summer Institute for Social Marketing and Health Communication who inspired this post following my lecture on New Technologies for Health Communication.

July 20, 2008 at 4:14 am 4 comments

Improve your Health and Enjoy your Life: The Engaging Messages of Medical Spam

Messages of health, happiness, and longevity. Who could resist?

When I peruse my spam folder, I am struck by the creatively crafted and enticing subject lines promising me doctor-approved help; that I can bypass doctors forever; that my doctor is hiding cures from me; or that I can buy a list of every doctor and dentist in the US. Of course, these messages are mixed in with those offering me new academic credentials or Rolex watches, or written in languages I can’t even identify. Interestingly, with the exception of creative misspellings of pharmaceuticals, the health spam tends to be spelled accurately, unlike the educational messages.

Here are some recent eye-catching subject lines:

  1. Improve your health and enjoy your life!
  2. Your last chance to become healthier
  3. The latest developments in medical science
  4. Relieve yourself from health problems
  5. What They Don’t Want You to Know What it Does to Your Body!
  6. 300,000 People die every year in USA of Obesity ….. Are you Next ???
  7. Never have to see a doctor to get a prescription again
  8. Get filled with health and gladness!
  9. Stop suffering from diseases!
  10. Dont let paim and ilness happen in your life.

I wonder how many people are enticed by this medical spam, bypassing their common sense. Clearly this is a problem with some documented cases of people who purchased online degrees, as described in Degrees by Mail: Look What You Can Buy for only $499. I especially worry about how medical spam might attract people with poor information literacy skills who are not healthy and want easy solutions.

July 14, 2008 at 8:35 pm 1 comment

Job Hunting? Think Twice about Revealing your Hobbies

If you are sending out resumes, or keeping one around just in case, think twice about having a personal section at the end that includes your hobbies. I read a friend’s resume who is job hunting and told her to remove her hobbies because it was easy to see how what she wrote could be misinterpreted and held against her by an employer. It was nothing exotic, just serious artistic accomplishments.

Listing hobbies on a resume is often promoted as a way to catch the eye of someone with a shared interest or stand out from other applicants. Since hobbies showcase your personality, they can add a personal touch or highlight some additional skills you have.

That all sounds good, but employers can read anything the wrong way:

If you list athletic activities, such as marathon runner, it makes you sound healthy and active but employers are concerned that your training schedule is more important than their needs.

If you list artistic pursuits, such as sculptor, they worry that you work only to support your artistic passion.

If you list volunteer activities, such as working in a homeless shelter, you sound like a wonderful person but scheduling conflicts may arise and your choice of organization might be different from those supported by the employer.

If you list activities revolving around children, such as soccer coach, you raise concerns about your priorities.

If your hobbies involve books, movies, music, or gardening, the reaction might be “So what, doesn’t everyone?” Unless you list karaoke asyour hobby, inducing fear of what will happen at the next company party.

I knew someone in school whose hobby was reading the dictionary. “Weird,” you might reasonably say. I saw his name years later as an award-winning crossword puzzle maker – but it’s a hobby that would raise eyebrows when applying for most jobs. What benefit is there to include these activities – and there may be a cost. Besides which, there may already be too much information about you online, according to the warnings about what current or potential employers learn from your Facebook profile or your tweets.

Redacting the hobbies from your resume may not be enough – think twice about revealing too much in your internet profiles. And then wait until the interview – or better yet the first day on the job – to reveal your non-professional inclinations.

July 13, 2008 at 6:54 pm 6 comments

Optimal Use of a Scale for Weight Loss

I perused a weight loss site, The DailyPlate, curious how they support people who are trying to lose weight. The site’s raison d’être seems to be tracking of calories consumed and burned. I checked out swing dancing, my favorite activity, only to find that of the seemingly countless types of dancing, swing burns 296 calories an hour for an average 145-pound person, over twice what accordion-playing burns. On the advertiser-supported site, Lance Armstrong lets me know what to do if I’m “tired of being tired”.

Since I found the effort of calculating calories burnt overwhelming with so many choices – how many calories did I burn searching for my activities? – I looked at the forums. I came across the very practical question of when is the best time of day to weigh oneself. It’s a fascinating question because it is so practical yet complex, as evidenced by the varied responses which depicted the emotional impact of weight loss or gain. The posts contained humor, mostly about doctors, euphemisms, and advice from personal experience or from the writer’s doctor or nutritionist.

ScaleI liked how supportive people were, in much the same way I’ve seen in other health forums. The responses showed the incredible range of opinions on how to use a scale as part of weight loss and, futhermore, the extent to which devices come with instructions for set up and maintenance but not for use. My scale is the most complex one I’ve ever owned, and, while I can change the battery, I do not avail myself of all of its features (feature creep is a growing problem in previously simple devices, including the toothbrush and the scale). But, like my lesson in videoconferencing, where I learned how to connect sites around the world without any advice about how to engage students, sometimes devices need instructions for optimal use. Should the AMA weigh in?

June 21, 2008 at 1:09 am 10 comments

Why Ted Kennedy Isn’t Obsessively Searching the Internet

Sen. Ted Kennedy was diagnosed this week with a malignant tumor. I bet he is not online looking for answers right now. Why? Because the answers have been provided by some of the world’s experts. In fact, they are there for everyone to read in the Boston Globe and other newspapers, complete with graphics.graphic

Some say health is the great equalizer. (Others call education, the internet, – you name it – the great equalizer.) Many studies have examined health disparities and looked at the impact of health insurance, ethnicity, gender, and other factors on the quality of health and health care.

Health disparities aside, anyone can become ill. Everyone’s hearts go out to Sen. Kennedy and his family at his diagnosis. But many people, given a devastating diagnosis – or even a minor one – turn to the internet for help.disparities

Before the internet, people relied primarily on their doctors. Now they rely on their doctors and the internet. But do people use the internet because they want to or because they have to?

Most people do not have world-renowned experts chiming in on the best course of treatment. Even the graphics – I can only remember one time that a doctor drew a sketch for me.

My friend Maureen emailed me:

I certainly have used the internet for health information. Usually what I find scares the daylights out of me! Or it’s too general and simplistic- until I find the right sites. Since I’m such a worrier I always need to be careful in that regard because it can be addictive- just one more search!

Maureen, a physician’s daughter, uses the internet for herself and her family, as do many others, obsessively searching for answers. People like Maureen and me use the internet because we are not rich or famous enough to have teams of experts to treat us. Ultimately, no one wants to be ill and, if they are, they want the best expertise available.

May 24, 2008 at 5:43 am 3 comments

What Do “New York on $5 a Day” and “Mathematics Made Easy” Have in Common?

The Boston Globe reports that 2 adults sharing a hotel room and eating 3 meals spend, on average, $606 a day in New York City. I go there often for business and have no trouble believing this. There was a book, published in 1964, called New York on $5 a Day. My interest is not inflation or travel costs, but book titles: what a compelling title! And much better than New York on $606 a Day. A search for “New York” books brings up Not for Tourists 2008 Guide to New York City and The Best Things to Do in New York City: 1001 Ideas. Not for tourists – but I am a tourist! – and if this is an insider’s guide then do natives read it? 2008 in the title reminds me that I need the new edition, and, if anything like car models, 2009 will be available well before 2008 ends. 1001 ideas makes me hyperventilate – a few good ones are all I need.

When I was in high school, a friend gave me Mathematics Made Easy, which was one of the most inspirational books I ever read. I saw this book recently in a church bazaar, and thought about the title, which refers to the topic, not the reader. Now the For Dummies series offers numerous math books, as does The Complete Idiot’s Guide. I ended up a math major in college: could Math for Dummies have similarly inspired me? The titles of these new books refer to the reader, not to the topic.

In this age of Oprah’s Book Club determining what sells, I wish we could return to book titles that neither insult nor overwhelm the reader. But then what about course titles? I teach a course, “Online Consumer Health”, previously “Online Health Communities”. My primary motivation for changing the name was that one of my students last fall told me he signed up for the course not knowing what an online health community was.

What if course titles tried to grab you, like book titles, but still remained descriptive? I could rename mine “Online Consumer Health: How to Design and Evaluate Health Web Sites” or “How People without Medical Training Use the Internet for Health Education and Support”. One of my favorite courses in graduate school, “Software Engineering”, could be renamed “Software Engineering: How to be a Systems Architect and Play Office Politics to your Advantage”. Maybe these are a little wordy, but they are certainly descriptive and attention-grabbing.

Online courses, of course, have the same problem but more so, since there may be less context when a student isn’t on campus. A perusal of online course titles showed that titles like “Business Writing 101” are still in vogue. How about renaming it “Business Writing for Clarity and Managerial Praise”? I will say that I have seen a few online courses with intriguing names: Trump University has courses called “The Trump Way to Wealth” and “How to Start a Business on a Shoestring Budget”. These are certainly compelling and descriptive names and also briefer than my examples above.

May 21, 2008 at 1:22 am 7 comments

The Impact of the Democratization of Health Information on Elders

Hongtu Chen and I, with some inspiration from Larry Prusack, just finished a journal paper on The Impact of the Democratization of Health Information on Elders. Here is the abstract:

Thanks to the Internet, elders have access to an unprecedented amount of health information about diseases and medications.  Much of this is information previously only available to medical professionals. The ease of locating – or the democratization of – health information has benefits and drawbacks. The benefits to elders are the ability to learn about all aspects of health whenever they choose. The drawbacks are that, due to lack of medical training and poor health literacy, they may not be able to effectively discern the quality of, comprehend, and use what they find online, and, worse, may rely on what they find online instead of seeking professional medical care.

May 19, 2008 at 12:12 am 1 comment

Atypical Patients Fall Through the Cracks

As hard as it is to be sick, it is harder when you are an atypical patient. An atypical patient is someone who has a disease and does not come from the population of people who typically get that disease. An example is the former US Senator from Massachusetts, Edward Brooke, who, in 2003, “was diagnosed with breast cancer and worked to raise awareness that the disease also affects men.” (This was just in the news because Barbara Walters revealed on “The Oprah Winfrey Show” that they were more than just friends.) Other examples are young women with heart disease and teenage boys with anorexia.

Atypical Patients Struggle to Find Information and Support Online

When someone is concerned about a disease, the internet is an easy place to turn for information and support. In fact, 80% of people in the US who use the Internet search for health information for themselves or a loved one.

Online information and support are generally targeted to the typical patient. While many people don’t know what to search for or what to call a disease, these difficulties are compounded for an atypical patient whose search results may not be relevant. A friend of mine asked me to help her find an online health community for a friend diagnosed with apraxia. Most of the sites I found supported the needs of parents whose children have apraxia. Finally, I asked a speech therapist, who suggested looking at stroke sites, since apraxia in adults often results from a stroke. Even with a diagnosis, it was hard to find relevant information and support.

One of my students last fall, Samantha Moland, designed an online health community for young women with osteoporosis and osteopenia, diseases that typically strike older women. Samantha believed that a young woman concerned about her bone density or diagnosed with osteoporosis needs information targeted to, support from, and a site designed for people her age.

Patients – and Doctors – Are Less Likely to Know Risks and Symptoms

People are notoriously bad about following medical advice about self-exams and healthy behaviors. When the warning signs of a disease are publicized, it is only the symptoms experienced by typical patients and, furthermore, the publicity is targeted to that population.

Atypical patients are less likely to know that they are at risk or how to detect a disease; thus men rarely perform breast self-exams. Sen. Brooke ignored early warning signs and “assumed the discomfort was simply his aging body’s way of slowing him down.” When his wife noticed a lump, he mentioned it to his doctor and ended up having a double mastectomy. Because of his own experience, he has worked to encourage doctors to perform breast exams on men and to encourage men to perform self-exams. Furthermore the symptoms of some diseases can be different in an atypical population, such as those of a woman experiencing a heart attack.

It is not just patients who lack awareness of risks and symptoms, but doctors as well. Furthermore, treatment for an atypical population can be more difficult since medications are less likely to have been tested on this population.

The Stigma of Disease Is Greater

Finally, an atypical patient may feel more of a stigma, or perceived stigma. Sen. Brooke, a private man, had trouble disclosing the disease even to his children initially. When an atypical patient discloses a diagnosis, the reaction is likely to be shock or disbelief, thus perpetuating the silence about these diseases.

Health Sites Need to Meet the Needs of Atypical Patients

Most health sites are designed for the populations who typically get that disease. It is important to design for these atypical patients as well in order to better meet their needs and to increase general awareness. In some cases, targeted sites are necessary since the information and support needs, diagnosis, and treatment of an atypical patient are so different from those of the populations more commonly afflicted.

Advancing from Atypical to Typical – The Name of a Disease and the Name of this Category of Disease

If a disease starts to become more common in a specific demographic, it gets its own name as well as greater recognition, such as early-onset Alzheimer’s disease. Although the symptoms are similar to Alzheimer’s disease in older patients, the patient’s age may impact both treatment and family support needs. Male menopause is a very different type of example, since it refers more to a collection of symptoms than a disease.

I thought there might be a term for diseases that strike an atypical population. Every term I tried had a different meaning, such as outlier or differential. Is there an accurate description in medical or lay terminology for this category of diseases?

May 5, 2008 at 1:30 am 2 comments

Three Reasons Why Travel Helps You to Get Your Work Done

Given that the length of a day can’t be extended, it is a challenge for many people to get their work done. This is especially true when the work in question requires concentration. Ironically, the office is often the worst environment for getting work done because of the multitude of distractions and interruptions. So here’s what to do: take a trip! Here are the reasons why:

  1. You get things done in preparation for a trip so that you don’t have to think about them while away. The bills are paid, the children’s schedule is in someone else’s hands,… and you have everything with you you need. How refreshing – and mind-clearing.
  2. You are in transition. While you are actually someplace at all times, the place you are in while traveling is inconsequential. Thus you don’t have to think about it. (Have you noticed how the monitors on trans-Atlantic flights are constantly reminding you where you are? It’s a great reason to travel first class: to have control over what you view – or don’t view.)
  3. You have few distractions. I know someone who met her husband in the seat next to her on a plane, but, in general, most people I know ignore their traveling companions unless they are ones they selected themselves. Ellen Goodman, a syndicated columnist, wrote – in 1984! – about how terrible it was when planes first added phones: “Now even this refuge has been violated.” But most people don’t talk on the phone on planes and even trains have their quiet cars.

Agatha Christie captured the glamour of travel in her books (although some of her passengers did not arrive at the destination they intended, if you know what I mean). But few of the people in her books were working while traveling, with the notable exception of detecting. Irene McAra-McWilliam, who gave the opening plenary at CHI 2008 in Florence, in an interview for eLearn Magazine, said, “Many places are excellent spaces for thought” and mentioned train travel as one of her optimal work environments. I agree, and find the Amtrak’s Acela from Boston to New York the perfect place to work. I wonder if anyone has studied the impact of the ambient noise or rhythmic motion on thought processes?

May 1, 2008 at 9:10 pm 1 comment

How Social Networking Dilutes the Definition of Friendship

It’s my birthday today and, for the first time, I received more birthday wishes from businesses and associates than I did from friends. Bette Midler sang, “You got to have friends,” and I have many friends who kindly remembered my birthday. But when site registration includes a date of birth, birthday messages with15% off coupons can result. (If I receive a 25% off coupon, does that mean we have a stronger relationship?)

MCI’s widely advertised Friends & Family calling program in the early 90’s introduced me to the commodification of friendship. This loyalty program provided “a lower rate for calls made to customers that they had included in their calling circle,” and, furthermore, increased switching cost since a departing customer’s former calling circle had to pay more for calls to that person. This program ended when a flat-rate plan was introduced, allowing people to call their friends without having to designate people as members of their circle.

Marilyn Monroe sang, “Diamonds are a girl’s best friend,” and obviously friendship has varied meanings. Social networking is stretching the definition of friendship even further as sites use different terminology to describe the people one is connected to. LinkedIn asks me to “Add friends or colleagues to your network?” “Friend” appears 29 times on my Facebook profile – and some of my Facebook “friends” are not people I even know well. In contrast, I really like it that twitter calls the people I follow “people”!

I believe that this overuse of “friend” can dilute the word’s meaning. Dionne Warwick’s “That’s what friends are for” is the title of a RevolutionHealth post about how “Good friends hold you together when you are falling apart, even if it’s over the silliest, most minute things.” A friend is “a person attached to another by feelings of affection or personal regard,” while social networking contacts are acquaintances or – perhaps a better word – associates: “a person united with another or others in an act, enterprise, or business; a partner or colleague“.

Studies show that people with close confidants have healthier immune systems, stronger hearts, and less depression and anxiety — not to mention more fun.” While people certainly form tight bonds in online health communities with others who are in a similar situation, I imagine these studies more likely refer to friends in the traditional sense. A study by Dr. Will Reader at Sheffield Hallam University found that most people “have, on average, five really close friends,” whether or not they use social networking sites. (I wonder how many people think that their stature is increased by the number of connections they have in a social networking site.)

It is not surprising that I was happier with the phone calls and cards from my friends, rather than those from businesses and my social networking associates. And what about that e-card from my dentist’s office – it’s hard to get a warm, fuzzy feeling. I can certainly think of more perfect ways to celebrate – in fact, already have! – than “A perfect way to celebrate: 25% off the regular price of…” And, if you are my friend, please come join us!

April 30, 2008 at 12:57 am 3 comments

“The Name’s Bond. James Bond.”

James BondI love James Bond movies. I have never read Ian Fleming’s novels or even thought much about him. I was therefore interested to read that the Imperial War Museum London recently launched an online exhibition exploring “the early life of Ian Fleming, his wartime career and work as a journalist and travel writer and how, as an author, he drew upon his own experiences to create the iconic character of James Bond that continues to have global appeal.” I am often hesitant to click on links, partially due to time constraints and partially due to some disappointing experiences with must-see websites, must-watch videos, and must-listen podcasts.

The virtual “sneak peek” exhibit used a gallery metaphor to depict some objects from the exhibit with audio explanations – complete with dozing guards. I didn’t find it particularly interesting or informative or even a good teaser for the actual exhibit. However, as an educational experience, it was successful in two ways. One was that, before giving up completely, I found some fascinating materials about Ian Fleming on the museum’s exhibition site. The other is that I read about Ian Fleming and about “For Your Eyes Only,” the exhibit name. Since I liked Casino Royale or any 007 movie with Sean Connery better, I read about other movies as well, including trivia, goofs, quotes, and the gadgets Q invented.

Suppose you were teaching a class and one of your students tactfully told you that your lecture was boring but that he or she spent hours researching the topic out of class. Would you ask for constructive criticism, be happy since you spurred self-directed learning, or say, as Bond did, “Well you can’t win them all”?

April 29, 2008 at 1:58 am 2 comments

Uninterruptible Concentration and Why Donald Knuth Should be President

My latest mental mash-up is about email and the presidency. Donald Knuth does work that “takes long hours of studying and uninterruptible concentration” and thus chose to no longer use email. Now, if the White House had the same policy, then the White House CIO would not need to claim “that email messages from 2003 to 2005 either can’t be produced because they’re not missing, because the computers they were on have been destroyed, or because it’s too hard to find them.” Not only are tax dollars spent on controversies such as this, but government officials are spending time writing and reading emails instead of focusing on the country’s needs with uninterruptible concentration.

I don’t know what Knuth’s politics are, but his books are brilliant and I appreciate his stance on email. I spend too much time every day on email and, even then, it’s never enough. (Am I the only one who has ever started off an email with “Sorry I didn’t respond sooner but…”?)

Instead of “a chicken in every pot and a car in every garage“, Knuth can institute a moratorium on email. Benjamin Franklin said, “Time is money“, and Knuth’s platform can be “Email is time”. “Time is the only thing we have in our lives” and through email we allow strangers to take it away from us and destroy our concentration. How is this any different than a phone call from a telemarketer interrupting dinner (before the do not call registry)?

April 27, 2008 at 8:15 am 1 comment

Tech Populism and Discotheque Populism: Parallel Revolutions

Tech populism, a term coined by Forrester Research, refers to people bringing the technology they use in their personal lives into the workplace where traditionally tools have been provided to them and their use prescribed. Employees may, for example, have access to online courses they are supposed to take, but they may prefer to search for and use information available on the web instead of utilizing these courses. Another example is when there is a corporate knowledge management initiative but employees find and contact each other through LinkedIn or other social networking services.

Tech populism is revolutionary in that the traditional tight controls on workplace behavior are violated – often to everyone’s benefit. And a revolt can occur when employers attempt to suppress tech populism.

Bona fide revolutions—whether political, cultural, or spiritual —occur infrequently in history” and one is certainly taking place in the workplace today. This revolution parallels what was arguably the biggest revolution in music, dancing, and nightlife: the discotheque.

The American Heritage Magazine article goes on to say that “the discotheque originated as a den of resistance in Nazi-occupied France” and, from the 1960s to the 1980s, impacted all aspects of culture in the US and other countries. “Discotheque dancing followed the 1960s pattern in which teenagers invented pop-culture trends and discarded them soon afterward, at which point they were taken up by adults,” just like Facebook today!

“Saturday Night Fever propelled disco fever to epidemic proportions: By 1978, 40 percent of all the music on Billboard’s Hot 100 was disco. Meanwhile the discofication of America proceeded: There were disco lunch boxes, disco “Snoopy” bed sheets and pillows, disco belt buckles, disco records by old-timers like Frank Sinatra and Ethel Merman, an estimated two hundred all-disco radio stations, disco dance courses, disco proms, books about the proper makeup to wear to discos—and an estimated twenty thousand discotheques nationwide.”

I coined discotheque populism to refer to how this “discofication” still lives in the music, lighting, and dance moves found in any club. Even the clothes, makeup, and hairstyles periodically return to popularity. Tech populism is no different – the Facebook of yesterday is the Twitter of today. Tomorrow will bring new applications that will be adopted (and even created) by teenagers first, become mainstream, and then be abandoned by the original adopters just when managers are developing policies for their use.

April 23, 2008 at 1:52 am 2 comments

The Democratization of Health Knowledge by Steve Denning, Guest Contributor

Steve DenningSteve Denning wrote previously about The democratization of knowledge: anyone can know anything:

“This phenomenon is particularly notable in the spontaneous formation of global communities of interest in the field of medical problems. Patients who were once at the mercy of doctors who had unique access to esoteric medical knowledge now find themselves able to contact other doctors and patients and explore their particular subject, gather new data, discover new leads for treatment, and learn how to cope with side effects. The emerging communities are global in nature. A patient in the US may be able to learn from a doctor in China or a suffering patient in Argentina and vice versa. The sufferers of rare diseases, where perhaps only a few victims exist around the world, can now make contact with each other and share experiences…”

I had an email discussion with Steve yesterday, in which he provided the following update on the Democratization of Health Knowledge:

Some more recent themes would be:
  • the rising resentment of some “experts” to the re-emergence of amateur knowledge, and a certain degree of unwarranted elitism involved in such “expert” attitudes. This resentment seems most marked in fields where the expert’s claim to superior expertise is most shaky e.g. political journalists.
  • the reluctance of some “experts” to share if they feel that the knowledge risks being misused or abused.
  • the gratitude of other “experts” who often see the amateurs as helpful partners.
  • the risk that a little knowledge is a dangerous thing. Alexander Pope: “Drink deep or taste not at all from the Pierian spring.” (That risk is however not limited to amateurs. The radical specialization of medicine means that someone can be an expert in a tiny field, but a real ignoramus in areas of their expertise and make egregious blunders.)
  • the reduction of such risk in cases where people have taken on the task of lifelong learning. They become adept at getting up to speed in a completely new field and remain curious, open-minded, imaginative, and rigorous in their exploration of a new field of knowledge. This is important both for amateurs and experts. Atul Gawande’s books document some of these issues in the medical field.

My more recent work has tended to move towards the area of things that are already very well known but are not acted on: what can be done about this?

The irony is that the larger knowledge problem since time immemorial has always been one of demand for knowledge, rather than one of supply of knowledge. Unless this is addressed, increased supply of knowledge doesn’t change things all that much. We don’t need a lot of esoteric web research to know that diet, exercise, smoking, or substance abuse are critical determinants of health and well-being. Yet how many people fail to act on this knowledge?

In organizations, people often know all too well what needs to be done, but often they can’t get others to listen and act. (In the medical field, you don’t need to be a genius to see that the overall cost-effectiveness of the US health system is far from optimal. So why hasn’t change happened?) My work is now aimed mainly at helping people overcome resistance to obviously needed change. I’ve spoken on occasion at medical conferences and discussed the issue with dentists.

I’m also working now on what’s involved in getting people working together at high levels of effectiveness, in high performance teams, networks, communities, and even political movements on a large scale or families and marriages at the opposite end of the spectrum. Within these “hot spots” of collaboration, knowledge transfer happens a lot more rapidly. I’m working on what’s involved in establishing and sustaining those environments.

April 21, 2008 at 9:13 pm 2 comments

The Democratization of Medical Knowledge

Marcus Welby, MD is an anachronism. The family doctor who pays house calls no longer exists except for some anachronists or doctors working in a few specific situations. The show, which ran from 1969-1976, predates the web. Hence Marcus Welby and his assistant probably got most of their medical updates from their monthly JAMA.

The amount of medical knowledge that exists and the amount that medical professionals need to know is constantly growing. Medical literature doubles every 19 years and, for AIDs, every 22 months, according to Tonya Hongsermeier, MD.

How can anyone possibly stay current? This is especially important because of the criticality of the information, not just the amount. As Tonya points out, doctors can be aided by tools that assist them, for example, alerting them to possible negative interactions between medications and other medical risks. Initiatives to codify knowledge and increase patient safety are taking place at Partners Healthcare.

Patients, who had limited access to medical knowledge in Marcus Welby’s days, now have a wealth of information available online – in fact, can access most of what physicians read. However, patients generally lack the basic knowledge and frameworks to understand and make sense of this abundance of readily accessible knowledge and, even more importantly, how to apply it. This is primarily due to lack of medical training and poor health literacy.

This democratization of medical knowledge, according to Larry Prusak, is a double-edged sword. Doctors struggle to stay on top of advances and, at the same time, patients increasingly try to acquire medical knowledge about their own or their loved one’s health. The disconnect between patients and doctors can be attributed in part to this democratization, which has changed the relationships between patients and their providers. The notion of empowered patients is one few could argue with; however an important component of expertise is knowing what you don’t know, knowing what to ignore, and knowing what is important. “There’s so much information (as well as misinformation) in medicine — and, yes, a lot of it can be Googled — that one major responsibility of an expert is to know what to ignore,” but many patients, understandably, lack that expertise as well as the necessary detachment. In fact, even doctors don’t treat themselves.

Not to digress, but I wrote about health and media recently and was interested that Marcus Welby, MD had an episode that focused on the diagnoses of breast cancer in two women, aired when “the wives of two public political figures” had been diagnosed with breast cancer. “The most motivational moment of this episode is James Brolin’s emerging from character to talk about diagnostic and early-detection tools for breast cancer. Such is the hallmark of television that [it] is not only entertaining but informative.” (This also goes to show the amazing information you can find on the internet when you aren’t even looking for it.)

April 16, 2008 at 12:08 am 6 comments

Crucibles as a Metaphor for Learning and Reflection

I am at a Working Knowledge conference on “Judgment and Decisions” at Babson College today, organized by Larry Prusak and Tom Davenport. Bob Thomas, Accenture and Fletcher School of Law and Diplomacy at Tufts University, just spoke about “Crucibles, Judgment and Leadership”. One of his main points is that people have to learn how they learn best, and crucible experiences can be pivotal for many people.

The five key ingredients for going from novice to adept expert performer are having talent, ambition, grasp of method, a great teacher, and feedback. Practice can trump talent, as research on expert performance shows. Outstanding performers devise a personal learning strategy that goes beyond practice to understanding how they learn best – and what their passion is. One way Bob learns what people love to do is by asking what they are doing when they lose track of time – what is often called a flow state.

While this talk focused on how businesses grow leaders, I believe Bob’s insights are valid for anyone in any role, including children with learning disabilities, who are explicitly taught how they learn and strategies to accommodate their learning disability. Many people, however, never reflect on their own learning style.

Bob offered a number of examples of crucible experiences in disparate organizations. The Peace Corp drops people into a developing country and expects, with minimal training, they will not only survive, but will learn and grow. The Mormon Church’s major crucible experience is the mission all members go on, which includes dealing with rejection, learning how to resolve conflicts with the person they are on the mission with, and learning what it means to be Mormon in a non-Mormon world. Hell’s Angels’ crucible experience is the run, a long ride where the leader negotiates the passage from one location to the next, making it more challenging than last year’s run.

Tom Davenport led a discussion focused on if – and should – crucible experiences be institutionalized. He gave examples of team-building experiences such as people falling into each other’s arms and fire-walking, but it is arguable if these are crucible experiences.

Even the examples from the Peace Corps, etc., above are orchestrated in a sense. Bob showed videos of two people discussing crucible experiences and they were serendipitous ones, and also ones where it was easy to see that another person, in the same situation, would have been devastated instead of inspired. Part of what I learned from this discussion is that you can prepare people for, and to be receptive to, learning experiences, but can’t necessarily orchestrate them. I would like to better understand the role of reflection and the extent it can be encouraged or scaffolded, since that seems to me to be a major difference between how people learn from a crucible – or any – experience.

April 15, 2008 at 9:22 pm 3 comments

Seven Habits of Highly Connected People by Stephen Downes, Guest Contributor

Stephen Downes was kind enough to allow me to publish this here. I was especially interested in it because FranklinCovey was one of my clients when I worked at EDS. Watch for a version of this to appear in eLearn Magazine later this month!

With apologies – and all due credit – to Stephen Covey.

1. Be Reactive

There’s a lot of talk about user-generated content on the web. That’s great. But if publishing your own stuff comes at the expense of reading, and commenting on, other people’s stuff, that’s not so great.

The first thing any connected person should be is receptive. Whether on a discussion forum, mailing list, or in a blogging community or gaming site, it is important to spend some time listening and getting the lay of the land.

Then, your forays into creating content should be as reactions to other people’s points of view. This will ensure, first of all, that they read your comment, and second, that your post is relevant to the discussion at hand.

Posting, after all, isn’t about airing your own views. It’s about connecting, and the best way to connect is to clearly draw the link between their content, and yours.

2. Go With The Flow

We all know those people in our online community who are out to Prove Something, to Get Things Done, or to Market Themselves.

These are people we tend to avoid. Because no matter what the topic of discussion, they’ll weigh in with their pet project, peeve or talking point.

When connecting online, it is more important to find the places you can add value rather than to pursue a particular goal or objective. The web is a fast-changing medium, and you need to adapt to fit the needs of the moment, rather than to be driving it forward along a specific agenda.

This doesn’t mean you shouldn’t have any goals or principles for yourself. You should; that’s what will inform your participation. It’s just a reminder that your goals are not the same as other people’s goals, and therefore that your online participation needs to respect that fact.

3. Connection Comes First

People talk about not having time for email, of not having time for blogs. Sometimes they even talk about working without an internet connection.

It’s good to take a break and go out camping, or to the club, or whatever. But the idea of replacing your online connecting with busy-work is mistaken.

In almost all fields, connecting with others online is the work. The papers you write, the memos your read and toss – all these have to do with connecting with people. Even if you work with your hands, making cabinets or rebuilding engines, all your contacts with customers and suppliers are about connecting with people.

If you don’t have enough time for reading email, writing blog posts, or posting discussion lists, ask yourself what other activities you are doing that are cutting in to your time. These are the things that are often less efficient uses of your time.

If you are spending time in meetings, spending time traveling or commuting to work, spending time reading books and magazines, spending time telephoning people (or worse, on hold, or playing phone tag) then you are wasting time that you could be spending connecting to people online.

If you make connecting a priority, you can take that walk in the forest of vacation in Cadiz without feeling you are not caught up.

4. Share

We’re all heard the advice to “think win-win”. Forget that advice. If you follow that advice, you will always be looking at things and saying, “what’s in it for me?” That’s exactly the wrong attitude to have in a connected world.

The way to function in a connected world is to share without thinking about what you will get in return. It is to share without worrying about so-called “free-riders” or people taking advantage of your work.

In a connected world, you want to be needed and wanted. This will, over time, cause resources to be sent to you, not as a reward for some piece of work, but because people will want to send you stuff to help you to be even more valuable to them.

When you share, people are more willing to share with you. In a networked world, this gives you access to more than you could ever produce or buy by yourself. By sharing, you increase your own capacity, which increases your marketability.

5. RTFM

RTFM stands for ‘Read The Fine Manual’ (or some variant thereof) and is one of the primary rules of conduct on the internet.

What it means, basically, is that people should make the effort to learn for themselves before seeking instruction from others.

Almost everything a person could need to know has been recorded somewhere online (by people who are sharing their knowledge freely). Taking the time and effort to look at this work is not merely respectful, it demonstrates a certain degree of competence and self-reliance.

For example, if your software fails to install, instead of calling customer service or posting a note on a bulletin board, copy the error message into the Google search field and look for answers. Almost every software error has been encountered (and documented) by someone before you.

Finally, when you do ask for help, you can state what you’ve read and tried, and why it didn’t work. This saves people from giving you advice you don’t need, and helps them focus on what’s unique about your problem.

6. Cooperate

Offline people collaborate. They join teams, share goals, and work together. Everybody works in the same place, thy use the same tools, and have the same underlying vision of the project or organization.

Online, people cooperate. They network. Each has his or her own goals and objectives, but what joins the whole is a web of protocols and communications. People contribute their own parts, created (as they say in open source programming) to ‘satisfy their own itch’.

This is probably the consequence of distance. Online, it is not possible to enforce your will or (beyond a limited extend) to get your way by shouting and intimidation. This means that online communications are much more voluntary than offline communications. And successful online connectors recognize this.

To cooperate, it is necessary to know the protocols. These are not rules – anybody can break them. But they establish the basis for communication. Protocols exist in all facets of online communications, from the technologies that connect software (like TCP/IP and HTML) to the ways people talk with each other (like netiquette and emoticons).

7. Be Yourself

What makes online communication work is the realization that, at the other end of that lifeless terminal, is a living and breathing human being.

The only way to enable people to understand you is to allow them to sympathize with you, to get to know you, to feel empathy for you. Comprehension has as much to do with feeling as it does with cognition.

People who use online communications ‘only for business’ – or worse, feel that other people shouldn’t be posting cat photos or playing Scrabble on Facebook – are employing only a small part of the communications capacity of the internet.

Learning and communicating are not merely acts of sending content over a wire. They are about engaging in (what Wittgenstein called) a ‘Way of Life’. Having a cat is as important for a physicist as having an advanced research lab. These common everyday things form the mental structure on which we hang the highly theoretical structure.

The idea behind ‘being yourself’ is not that you have some sort of offline life (though you may). Rather, it’s a recognition that your online life encompasses the many different facets of your life, and that it is important that these facets all be represented and work together.

April 3, 2008 at 9:55 pm 23 comments

Talent, Devotion, and Compensation: Attracting and Retaining Teachers

Sometimes a juxtaposition is more powerful than a mashup. This morning I was at a public high school and later at a private school. While I was at each for different reasons, I was struck by the talent and devotion of the people at both schools. While I don’t know their salaries, compensation to attract and retain teachers and education support professionals is lower in the US than in other countries and lower than comparable professions. Teaching for many, myself included, is a labor of love and a chance to use one’s skills and knowledge to help others. Because of this juxtaposition I find myself wondering what triggers this devotion in people and what causes them to flourish in their profession, albeit in the very different environments I was in today. (The mental mashup here, by the way, was trying to understand the impact of salary after reading a press release about the Economic Policy Institute’s new study.)

Online teachers and adjunct faculty are typically compensated less, and have less prestige, than other teachers. While online teachers may have fewer advising or administrative responsibilities, they work very hard, sometimes harder, than teachers in the classroom because they have to master technologies and be available more hours. I wonder not only what triggers devotion in such teachers but what causes it to whither and even dissipate – and what role compensation plays in this.

April 2, 2008 at 11:27 pm 8 comments

Serious Games for Serious Topics

Learning to detect counterfeit currency or diagnose and treat a disease in time to save a patient’s life hardly sound frivolous. Yet “serious games” are increasingly being used for training for bank employees, medical students, and others as a way of making learning more compelling and simulating reality. Clark Quinn and I wrote a column in eLearn Magazine addressing if the design of a game, or even the fact that a game is being used, induces a sense of frivolity that lessens the impact of the learning for serious topics.

March 29, 2008 at 5:23 am 3 comments

Ten Reasons Why Podcasts Are Inferior to Text

Ten reasons podcasts don’t work for education are:

  1. It is faster to read than to listen to text.
  2. It is difficult to skim a podcast (fast-forward can sometimes be used) while most people skim text and carefully read the parts that interest them.
  3. It is easier and quicker to reread text than to replay part of a podcast.
  4. Interesting passages of text can be highlighted or, if online, copied into notes.
  5. Text can be illustrated.
  6. Most people, when driving, working out, etc., do not have the concentration to stay focused on an educational podcast.
  7. When a podcast is of high quality and slickly produced, it seems like entertainment, especially when it starts with music.
  8. When a podcast is of poor quality, the background noise or pauses and speech fillers are annoying to listen to.
  9. It is easier to get into a flow state when reading text because you are less likely to be multitasking.
  10. Deeper learning, as Don Norman says, “takes time and thought”, and it is harder to have deep thoughts when listening passively or when multitasking.

I developed this list after talking to some of Jared Spool’s students, who sent me an e-learning scenario centered on the use of podcasting. While writing this, I listened to a podcast that Jared made, just to make sure that my list was accurate. Part way through, my son called and I dropped off his cleats and then stopped at the track and ran because it is a sunny day and I had been sitting too long. When I got back, the podcast was still playing. Voice can convey nuances that text does not, and Jared is an entertaining speaker, but I prefer text and am unlikely to ever make podcasts for my students.

March 26, 2008 at 12:17 am 12 comments

How “Dancing with the Stars” Can Reduce Your Dementia Risk

Why sit at home when you can be out dancing? Not only is it fun and good exercise, it can reduce your risk of dementia according to a research study conducted by Dr. Joe Verghese. Dr. Verghese theorizes the underlying reason is that “Dance is a complex activity. You have to follow the music, remember the steps and improvise.” Dance is also a social activity, typically done with a partner.

Dancing with the Stars and the knock-off shows are increasing interest in dance, in much the same way Nick/Tuck increased interest in cosmetic surgery. Of course, just like staring in the mirror at your wrinkles doesn’t mean you will have surgery, watching dancing doesn’t mean you will get off the sofa.

Knowing the potential health benefits may prove to be an incentive. Since “roughly 18%, of the USA’s 79 million baby boomers can expect to develop Alzheimer’s or some other form of dementia in their lifetime“, according to a newly released report 2008 Alzheimer’s Disease Facts and Figures.

March 19, 2008 at 8:33 pm Leave a comment

10 Things You Can Do To Be a Brilliant Orator

If you are going to give a talk, you might as well be a brilliant orator, a phrase that has been used to describe Julius Caesar, Barack Obama, and many in between. Here are 10 things you can do to improve your oratory performance:

  1. Have an interesting message to convey. It sounds simple, but, if it was that easy, why doesn’t everyone do it?
  2. Have a conversation with your audience. Orating does not mean lecturing or preaching. It means conveying a message to people. Since each person took the trouble to be there to hear you, talk to him or her.
  3. Do not read your slides or notes. If you do, I guarantee someone (if not many) will think, “I can read that myself so why am I listening to this person?”
  4. Don’t say “umm”. Pause instead. Or breathe. (Well, always breathe.)
  5. Look friendly and approachable. You know how people like babies and cute animals? You want people there to like you because they will get more out of your presentation.
  6. Use self-deprecating humor, which will never offend people. Surely there is something funny you can say about yourself!
  7. Tell a story to illustrate to illustrate your point. Stories tend to be memorable and thus a good reminder of your message. They are also fun to tell and if you are having fun your listeners are more likely to as well.
  8. If someone asks a question, don’t be nervous because you are the expert. Worst case , if you don’t know how to answer the question, answer a different question that you do know the answer to that is at least related.
  9. Have a plant in the audience to ask a question that you want to answer. This way you will look good and you avoid having to wonder why no one asked a question. Usually after the first question you will get others (see #8).
  10. Tape a practice session and actually watch or listen to it. It is very painful to do! A few years ago I gave a talk that was streamed on the internet and it took me 3 months before I could watch it, but it was pretty good except I said “umm” too much (see #4).

March 15, 2008 at 7:31 am 4 comments

Persuade Me I Need a Degree: How Unaccredited Online Degree Programs Advertise

The funniest emails caught in my spam filter are the ones that offer me degrees in various enticing ways. Since I am on a “top 10” kick this week, my favorites in my last perusal are the following charmingly ungrammatical ones (#2 reminds me of Porgy and Bess: “Is you is or is you ain’t my baby?”) or the ones that cause doubt (such as #1: can a degree ever expire?):

  1. Expired academic qualification
  2. Is your skills about to expired?
  3. Without books and education process call now
  4. MBA the hottest most sought after degree
  5. Receive PhD that you deserve from an Established Prestigious Institution
  6. Receive MBA very fast
  7. Nominated for a Ph.d
  8. Celebrate your life-long achievements
  9. Start earning the salary you deserve by obtaining the approopriate University Degree
  10. Your Degree shipped by Fed-Ex

In Degrees by Mail: Look What You Can Buy for only $499, I wrote about reading these online degree offers “more carefully than other unsolicited emails to find out how much the degree costs, how long it takes to ‘earn’ it, and what the plausible-sounding name of the institution is”. Now I just read the subject lines. But I still worry that these ads make it harder for the high quality online programs to move away from the déclassé correspondence schools that used to be so common. The biggest issues to me are how students find the high quality programs while avoiding the ones advertised above, and how employers know which online degrees are legitimate and from reputable institutions.

March 12, 2008 at 11:32 pm 10 comments

Eliot Spitzer Would Be Better Off If He Practiced What He Preached

Eliot Spitzer, the governor of New York, is embroiled in a scandal and announced that he “failed to live up to the standard I expected of myself”. His alleged actions are more notable because of his anti-corruption stance. (I also heard that governor was his stepping stone to the White House, which may never happen now.)

Not ever wanting to be accused of not practicing what I preach, I went to my list of Ten Things You Can Do in Ten Minutes To Be a More Successful e-learning Professional and did #8, to contact an e-learning expert. Actually, it was my own spin on #8, but creativity and designing for our target audience are part of our profession!

Here’s what I did: I emailed Don Norman, who is an expert at many things, including e-learning, and is one of the people I most admire. I will add a caveat here that I know him and have asked him for advice before so I felt hopeful that he would respond. Don gave me brief feedback on the issue I asked him about, promising more since he was preparing for a trip, and detailed feedback on my blog, in particular, on my recent post on The Disconnect Between Patients and Doctors. As a result of this, I am writing a new post since I agree with his points.

Hence I have practiced what I preach and am better off for it since the insights I received will make me more successful. I bet Governor Spitzer wishes he had listened to his own advice.

March 11, 2008 at 11:29 pm 1 comment

Ten Things You Can Do in Ten Minutes To Be a More Successful e-learning Professional

You need a break and, instead of heading to the coffee pot, what can you do in 10 minutes that will refresh and energize you and increase your job satisfaction and career success?

  1. Find an e-learning conference to go to and send an email to your manager giving 10 reasons why this will help you perform better. If travel is a problem, find a local seminar to go to.
  2. Find an e-learning conference to submit to. It is much better to go to a conference as a speaker and the process of figuring out what you want to talk about and writing an abstract will be a valuable reflection process.
  3. Write a short description of what you learned at the last conference or seminar you went to or the last article or book you read and circulate it to your colleagues. They will appreciate it and it will reinforce what you learned. It might also help your chances of getting funding for your next conference (see 1).
  4. Do a search on “e-learning”, “instructional design”, “online degrees”, or another topic related to your job and see what people find. Refine your search and try again. Maybe you’ll find something you want to look at, maybe not. If not, use the rest of your ten minutes and search on something totally different, like “swing dancing”, and see if you like the results better.
  5. Write a note your manager with 10 reasons why you deserve a 10% salary increase. Don’t send it unless you came up with the reasons quickly. If you struggled with the list, rewrite it as the 10 things you need to do to deserve a 10% salary increase. Then act upon it.
  6. Take an online course – or at least part of one- and think about how it is designed rather than the content. What are 10 things you would do to improve it? (What would colleagues say if it was your class they were going through?)
  7. Read 10 current e-learning job descriptions and see how many you are qualified for. Write down 10 ideas for your own professional development just in case you ever want to go job hunting.
  8. Email the e-learning expert you most admire and ask him or her to schedule a 10 minute phone call with you to discuss your three most important questions about e-learning. Write up what you learn (when you have the call) and circulate it to your colleagues (see 3). Also, make sure you introduce yourself to that person at your next conference (see 1).
  9. Do a search on “learning technology trends” or “Web 2.0” and identify at least one new technology you know little about that has the potential to improve what you do. Read one or two articles about it.
  10. Ask a colleague the most exciting e-learning idea he or she has had or read about recently and discuss it why it is exciting. You can do this by phone or email, but over coffee is best. See, you get to go to the coffee pot after all!

Finally, think of your own idea for a 10 minute activity that can renew and improve your e-learning practice and post it as a comment to this article so others can benefit.

Thanks to Mark Notess for suggestions 7-9 and to CIO Magazine for inspiring the idea.

March 10, 2008 at 8:37 pm 27 comments

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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