Must Waiting Be Inherent To Medical Care?

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care.  Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood.  If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency.  Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host?  How long is the wait?  It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women

I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.

Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.

Writing Enticing Yet Accurate Health Content: Lessons from Journalism

Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:

LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?

GS:  I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver.  They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.

LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.

GS:  We often see solid reporting that is undercut by a sensational headline.  Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it.  In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction.  Someone with a publishing concern must take responsibility for the total package of what is communicated.

LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.

GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media.  Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable.  I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.

LG: What advice do you have for health communicators who are creating web or social media content?

GS:  Content is still king.  Substance over flash.  Steak over sizzle.  There is a tremendous responsibility to get things right on these vital health and health care topics.  Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first.  We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.

Sukar Ala Sukar- A Website Design for Diabetes Education and Support for Saudi Arabian and Middle Eastern Children

Sukar Ala Sukar is a website for 4th and 5th grade Saudi Arabian and Middle Eastern children to learn about diabetes. Nada Farhat, MD, designed this in my fall course, Online Consumer Health, and she and I revised her project to submit to the 2010 DiabetesMine™ Design Challenge, a competition “to encourage creative new tools for improving life with diabetes”, in the hopes that we would get funding to implement and evaluate the site.

Here is our description: We designed a website to meet the education and support needs of children with diabetes, at risk, or with diabetic family members who live in Saudi Arabia and other Middle Eastern countries or whose families are from these countries. Culture and language (English and Arabic) are embedded in the website design which includes separate areas for girls and boys in keeping with societal norms. The website goals are to increase awareness of diabetes and debunk myths children might have, which are carried out though text, video, games, recipes, and activities. Social media further reinforces education and provides peer support. Our goal is to develop and evaluate the effectiveness of the website with Saudi children in the US and in Saudi Arabia.

To me, this project is fascinating in three ways: the impact of culture on effective design; design of a bilingual site when one language is read left-to-right and the other right-to-left; and how health website design for children is different than for adults. Nada’s final paper for the course addresses many of these through her competitive analysis and research. Our initial answers to the culture question are in the entry. For instance, one way to address cultural norms is to separate the site by gender. Another is to use drawings of people since photographs of girls violate cultural norms. We know that bilingual design can be challenging for languages that are more similar than English and Arabic, such as English and Spanish, especially when one language uses more characters than the other to express the same thing. We also know the importance of localization. And for children’s design we want to be consistent with best practices yet be fresh.

We welcome your feedback.

The “Dark Side” of the Internet for Healthcare

While Gunther Eysenbach is famous for saying no one ever died from using the Internet for health, the “dark side” exists: the people who obsessively search for health information, the people who forgo common sense to believe there are easy ways to lose weight and miracle cures for as yet incurable diseases. Another facet is the credibility of online information; I wrote about a company that was caught and fined for fabricating patient stories in Patient Stories on Health Web Sites Can Not Always Be Trusted in both e-patients.net (heavily commented) and MedPage Today’s kevinmd.com.

Another facet of the “dark side” is when technology is the focus instead of patients. We all, as patients, need eye contact when talking to a healthcare professional. I first noticed this when my children’s pediatrician started walking into appointments with a laptop. I was acutely aware of it when a nurse asked me very personal questions without looking at me, which I wrote about in EHR Etiquette and the Importance of Eye Contact in Clinician-Patient Communication, which was published in e-patients.net/ and The Health Care Blog.

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.

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.]

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.

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!

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.

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.

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.

The Disconnect Between Patients and Doctors

In yesterday’s talk, Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites, I started off by asking if I should lose 10 lbs. on the Atkins diet or by joining Weight Watchers. Melanie Zibit answered that I would lose the weight more slowly with Weight Watchers but would be more likely to keep it off. Most people agreed that this was good advice (the wisdom of crowds). I then asked if knowing anything about the weight loss experience or medical credentials of the advice-giver would have an impact, which people agreed with. Using sites like Amazon.com, a book-purchasing decision can be made based on the wisdom of crowds (ranking and ratings), expert opinions (from professional reviewers or well-known people in the field), or other readers (whose reviews are themselves rated). But a poor book choice has few ramifications, while health decisions can have severe consequences.

Many people get weight loss or any other type of health advice from strangers or friends, often knowing little about their experience or credentials; from books or magazines (every celebrity seems to have a weight loss secret or problem, based on a perusal at the supermarket check-out); from ads in magazines or television; or even from spam (I get frequent offer for weight loss drugs without a doctor’s prescription). People also learn about weight loss online – 49% of U.S. internet users search for diet or nutrition advice and 80% search for health advice. A search for “weight loss” returned 75,000,000 results, with “diet” and “fat” getting even more, and “weight” returning 1/2 billion results! Weight loss is certainly a common concern, but searches on other health topics also yield millions of results.

The results range from the Mayo Clinic to herbal remedies “As Seen on Oprah”. Most health seekers gather “health advice online without consistently examining the quality indicators of the information they find“. Information and health literacy impact the search results people select and the sites they use. Poor information literacy skills impact people’s ability to discern the quality of information. Poor health literacy skills – the lack of understanding about health coupled with the emotional burden of health concerns – make it far too easy for people to desire and seek magical cures or easy solutions. There are few reliable indications of quality; the only “Good Housekeeping Seal of Approval” in health is HONcode.

Sites vary in their usefulness, accuracy, branding, presence of advertising, and amount of interactivity, to name a few attributes. The most heavily used sites are WebMD.com and RevolutionHealth.com, both covering all diseases and conditions. Other sites are more specialized, such as Leroy Sievers’ heavily commented cancer blog at NPR.org, the very focused discussions on the Road Back Foundation bulletin board, and the well-segmented and very active community message boards at Weightwatchers.com. There are millions more examples, well-designed and dreadful, heavily used and ghost towns, frequently updated and unchanged in 10 years.

With consumer-directed care, patients are being asked to play a greater role in their health care. Providers are putting considerable effort into Electronic Health Records, Pay-for-Performance – countless initiatives to improve quality, reduce errors, and cut costs. But when a someone lies in bed at night worrying about their own health or that of a loved ones, EHR privacy is unlikely to be what is on their mind. Turning to the internet is easy with the constant availability – no need for an appointment or co-pay.

Consumer health sites have a significant impact on the quality of life of their users who turn to them before – or instead of – seeking medical help. Many doctors don’t know what their patients are doing online, and many dread the patient who arrives at an appointment armed with search results. “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 patients often lack that expertise.

That is where the disconnect lies between patients and doctors: that the time spent online is invisible to or an annoyance to a doctor but is a lifeline for many patients. Doctors need to understand and learn from their patient’s information seeking behaviors. And there is a lot to learn since what patients communicate online is a very different lens on their concerns and needs than what a doctor hears during a consultation, which is a small snapshot of how the patient is feeling, provided in a location much less comfortable than the patient’s home. And doctors need to “prescribe” sites with reliable and useful information, and online health communities where peer support is available.

Technology is not the answer, even good design is not the answer – although both can help. So can better information and health literacy skills. The greatest impact will come from bridging the chasm between what patients are currently doing online and what takes place during the doctor-patient consultation.

Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites

I spoke today at the Massachusetts Technology Leadership Council Healthcare Lunch & Learn Series on Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites. My co-presenters were John Lester (also known as Pathfinder Linden) who left Second Life for Waltham and Amir Lewkowicz, co-founder and Vice President for Partnerships at Inspire. I will post my notes shortly but until then, here is the abstract:

With consumer-directed care, patients are being asked to play a greater role in their health care. Moreover, those with chronic diseases often get better counsel from other sufferers than they do from physicians. This talk will cover the most effective ways to design and evaluate online health communities.

Changes in the health care system and the pervasiveness of the Internet have led to an increased use of the Internet by health care consumers. 80% of people in the US who use the Internet are using it for health searches.

Health web sites and online health communities provide a means for patients and their families to learn about an illness and seek support. The importance of online consumer health is evidenced by the popularity of sites such as WebMD and RevolutionHealth. Consumer health sites have a significant impact on the quality of life of their users who turn to them before seeking medical help.

Health web sites and online health communities raise difficult design challenges. These challenges include wide variability of participant’s medical expertise, health literacy, and technology literacy. A major risk is the potential consequences when poor advice is taken or when professional treatment is not sought.

By participating in this interactive discussion you will learn:

1) How online communities benefit consumers and businesses
2) How the nature of the disease or illness impacts site design
3) How innovative Web 2.0 technologies can enhance participation
4) What is necessary to start and sustain successful sites

Increasing Health Literacy and Awareness on TV

If I was a screenwriter and needed an au courant health problem to feature, I know where to turn. The Winter 2008 issue of Real to Reel provides a synopsis from media sources and leading health agencies, including how malaria-infected mosquitoes are being used to develop a new vaccine and how a door-to-door salesman donated a kidney to someone he tried to sell a vacuum cleaner to. It’s easy to imagine the taken-from-real-life dramas that could result and to furthermore see the opportunities to increase health literacy and awareness.

Hollywood, Health & Society (HHS), part of the USC Annenberg Norman Lear Center, helps entertainment writers with medical and health storylines. Their Sentinel for Health Awards “recognize exemplary TV storylines that best inform, educate and motivate viewers to make choices for healthier and safer lives. Past recognition has been given for storylines about breast cancer, diabetes, HIV/AIDS, alcoholism, disability, fetal alcohol syndrome, car crashes, organ donation, and safe sex.” The award was started by the CDC for soap operas and has been expanded to include “daytime drama, primetime drama, primetime minor storyline, primetime comedy and telenovela.”

While I am focused primarily on the use of health web sites and online health communities, I realize the strong influence of print, TV, plays, and movies. I wrote earlier this month about Ellen Goodman’s column about conflicting health messages and the difficulty of knowing what to do – or which study to believe – to stay healthy. The influence of TV, plays, and movies is more powerful since the message is more visual and designed to engage the viewer’s emotions (my heart was pounding the last time I watched Nip/Tuck). According to O Magazine, the CDC reports that 88% of Americans learn about health issues from TV and I imagine that the number is high for movies, plays, novels, and other creative media: virtually all include someone who is ill, dying, or dies during the course of the story.

Where is the line between accuracy and creative license? The CDC and other agencies are at the accuracy end, but efforts like HHS certainly increase the accuracy of the abundant creative outlets. On the one hand, Forbes reports that “a new study by researchers at the University of Southern California, published this month in the Journal of Health Communication,… shows viewers of an ER storyline about teen obesity, hypertension and healthy eating habits were 65% more likely to report a positive change in their behavior after watching.” And on the other hand, WebMD reports that the number of people having cosmetic surgery is increasing and that many people have inaccurate perceptions of the recovery process and the impact of the surgery on their lives due in part to television makeover shows like The Swan and Extreme Makeover.

Health web sites and online health communities share many of these problems in terms of their accuracy and potential impact, the primary difference being that they are not designed for entertainment.

Lowering the Barriers to Quality Health Care

I am helping design an online health community for Alzheimer’s caregivers, and one of the concerns we have is lowering the barriers to production and consumption of user-generated content. There are many sites that have only expert-generated content, but our theory is that caregivers learn from and support each other, and that writing about their caregiving experiences can be both cathartic and empowering since they are helping others. The challenges are how to design this effectively, how to get people using the site, and how to manage information quality.

This notion of lowering barriers came to mind as well when I read about how Massachusetts’ Public Health Council approved the opening of MinuteClinics at CVS. The clinics, staffed by nurse practitioners, are intended for the treatment of “minor problems such as sore throats, ear infections, and poison ivy, but not chronic diseases such as cancer or diabetes, nor serious emergencies.” There is a reported shortage of primary care doctors in Massachusetts, leading to overburdened hospital emergency rooms. What these MinuteClinics seem to have the potential to do is lower the barriers to receiving competent professional care.

Apparently there are many retailers and employers offering on-site clinics. Carl Mercurio, President, Corporate Research Group, commented that their “report doesn’t make any clinical observations or draw any conclusions about the quality of care delivered by retail clinics. It’s really a report about the economics of these clinics as a business model. Our primary conclusion is that retail clinics are sustaining heavy economic losses and will not reach their near-term expansion goals without a serious shakeout and industry consolidation. However, the retail clinic concept will survive in our view as a limited solution to a very specific problem, i.e., providing convenient low-cost care for a limited number of acute ailments. Overall, my understanding is that nurse practitioners are very well qualified to deliver the type of care administered in retail settings. However, I don’t have any particular insights to support or refute that view.”

A Pew Report on Online Health Search 2006 found that 80% of Internet users in the US search for health information, and only “15% of health seekers say they ‘always’ check the source and date of the health information they find online”, or “about 85 million Americans [are] gathering health advice online without consistently examining the quality indicators of the information they find.”

The barriers to performing health searches are low. Information literacy and health literacy skills are also low for far too many people. Since quality is a huge problem, arguably more so with medical information that any other type of information, effective branding is paramount. While I was initially not enthusiastic about the concept of clinics in stores, I believe they may serve an important need for many and are preferable to poor quality online advice, long emergency room waits, or ignoring a medical problem.