Posts tagged ‘expertise’

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.

October 19, 2011 at 8:22 am 38 comments

Ask our Nutritionist: How Stonyfield and Other Websites Provide Nutrition Advice

Many food and health websites include the services of a nutritionist to answer consumer questions by email or on the site. Vicki Koenig, MS, RD, CDN is a Nutritionist who works for Stonyfield Farm and one of her responsibilities there is responding by email to “Ask our Nutritionist” questions. Vicki receives between 40 and 70 questions a month and answers them all individually, although for some she peruses her archive of her previous answers, which is categorized by topic, and the articles she wrote for the site. The most common are gluten-free, diet, and probiotic questions. People are also interested in where the milk comes from and how the cows are treated. There are many “off-the-wall” ones; the strangest of which was a request for a yogurt-covered dog biscuit recipe (which she found and sent). One of the most absurd was someone asking can your stomach explode from a food-eating contest (it can’t, Vicki assured me).

Despite their disclaimer (The information provided by our nutritionist is not intended to diagnose, treat, cure or prevent any disease or give medical advise [sic]. Always consult your family health practitioner before altering your health regimen) people ask Vicki questions that are out of the context of her role. There are many from people who are desperately looking for answers to serious health problems, and she refers them to sites like the American Dietetic Association or other profession organizations. For instance, someone recently wrote that she has lupus and wanted to know what to do, and Vicki provided links but not a personalized diet.

To ask Vicki a question requires a name and email address, which makes sense since she responds by email. There is also a picture of her with her daughters and a bio; both make her seem very human and welcoming. When I asked, Vicki said that she needed to update the picture since her children are older now and that a marketing person contributed to part of the bio.  She emphasized that she is very human. She stated that she’s a health professional, working mom, business partner with her husband and a consumer too.

Vicki also answers some of the questions that arrive through Facebook especially if clarification is needed. She contributed to the FAQs on the website and wrote all the articles in the Healthy Tips Library. She doesn’t respond to Twitter. Vicki has her own Facebook page, which she uses frequently, and a less used Twitter account. Her private practice has a website as well, which links to her Stonyfield articles (but does not include an Ask the Nutritionist feature).

One of the things I was curious about, especially after learning the volume of questions Vicki gets, was why Stonyfield doesn’t promote Vicki’s Q&A more and why it is done as private correspondence as opposed to being displayed and archived prominently on the site. Stonyfield’s response was:

We agree that our Ask our Nutritionist is a valuable and beneficial feature for our consumers. We can and should do a better job at featuring some of the frequently asked questions that consumers raise as they relate to health through good nutrition and organic foods. We tried to address this by providing related topics in our Healthy Tips Library, as well as focus on key product attributes that Stonyfield can deliver i.e. DHA, Omega 3s, etc.

I looked at a few other food company websites: Del Monte and Lean Cuisine are two that offer a list of Q&A with a nutritionist. Del Monte’s features a picture and bio of their nutritionist and an uncategorized list of questions with the promise that a new one is answered weekly from those submitted. Lean Cuisine has far more questions which are selected from some of “the most popular ones” asked and categorized. While the topics make sense, not all categories are populated. Some of the answers include product promotion. There is no bio with the picture of the nutritionist and registration is required to ask a question. Both are easy to find from the home pages.

The Dana Farber Cancer Center website includes a categorized Ask the Nutritionist Archive. The questions and answered are very detailed and specific to cancer patients. They also include a first name, last initial, and city and state, making them seem more authentic.Like the Stonyfield site, they are hard to find (without doing a search).

The Massachusetts Department of Public Health has an Ask the Nutritionist blog, where the comment field is used to ask questions and the answers are included below the question. While not categorized by topic, they are scrollable and many are very detailed and specific. There is also a picture and name but not a bio of the nutritionist. The blog is hard to find from the Dept. of Public Health site.

Go Ask Alice, a website developed by Columbia University primarily for college and high school students, has a page of nutrition questions. While the people responding are not identified by name or picture, the site states that all questions are answered by a team including Columbia University health educators. Each question includes the date originally published and the date last updated/reviewed and ends with links to related Q&As.

Curious I searched a little more and found other examples. Some, like Meritus Endocrinology, have an extensive archive while Washington Hospital Center’s Ask the Dietitian has a short list of questions. All the ones I found archived questions, although without any identifying information or a date, and most made it easy to ask questions. Stonyfield is therefore unusual in not providing an archive of questions.

If I was redesigning the Stonyfield site, I would include Vicki on the home page and let people coming to the site know that she is available to answer questions because it is such a valuable service and one that benefits the company in the helpfulness of this service to those who manage to find it on the site. (Of course, if more people know of Vicki’s availability, then her services might have to be limited.) I would include Vicki’s most recent Q&A on the home page with a link to the archive as a draw. Finally I would include at least a partial archive of questions and answers and, like Go Ask Alice! would include a date, and, like Dana Farber, would include at least a first name, city, and state because it makes it seem more like it came from a real person. However none of the questions I looked at on the above sites were generic or seemed fabricated because of the level of detail. The archive could prove valuable since someone else might have a question that you didn’t think to ask but benefit from. While there is already an enormous amount of information available online, the credibility of a nutritionist and the easy to digest (not an intentional pun) format of a Q&A could only benefit Stonyfield and allow more consumers to learn from other people’s questions and Vicki’s answers.

January 17, 2011 at 4:17 am 3 comments

From Twitter to Megaphones: Seven Lessons Learned about Public Health Crisis Communication

In Boston we took the availability and quality of our tap water for granted until May 1, 2010, when a major water pipe break interrupted water service to two million Greater Boston residents. Information spread quickly to citizens about the problem and what to do, all the more notable because the water main break occurred on a Saturday. In this age of consumer paranoia about withheld information, the Massachusetts Water Resources Authority (MWRA) was in front of cameras and online, communicating what they knew and what they were doing. Tufts University and the Boston Public Health Commission used communication channels ranging from Twitter to megaphones to get the word out. Their behind-the-scenes emergency planning processes, their response to this incident, and seven lessons learned from this short-lived crisis are applicable to many other crises.

The Evolution of the Tufts Emergency Alert System

Because I learned about the broken water main in a text message from Tufts University, where I teach, I spoke to Geoff Bartlett, Technical Services Manager in the Department of Public and Environmental Safety (DPES) at Tufts about the process they used to communicate about the broken water main. First he told me how Tufts Emergency Alert System started and evolved. Following the Virginia Tech massacre in 2007, DPES, University Relations, and University Information Technology invested in emergency notification system technology and developed policies for when and how it would be used. The Tufts Emergency Alert System was initially intended for life threatening emergencies after the events on the Virginia Tech campus showed the need for rapid and reliable campus-wide communication. In requesting student and employee contact information, Tufts made this clear since they thought people would be reluctant to participate if they anticipated inconsequential messages.

Tufts first used the emergency alert system to inform the campus of the status of a power outage in October 2008 because the email communication plan in place for this type of Tier 2 emergency wouldn’t work because of the lack of electricity. This initial use led to the revised policy that the emergency alert system should be used aggressively for dire emergencies but less aggressively when there is no threat to health, safety, or life. Almost exactly one year later, there was another power outage in October 2009, and short text messages were sent. While there was planning for H1N1, the emergency alert system was never used because there was no urgency to push messages. The third use was for the water main break.

How Tufts Creates Messages

While Tufts considered preparing messages in advance, it didn’t seem possible to anticipate every situation. Instead they created “Strunk and White” guidelines for crisis communication. Their three guiding principles for creating initial messages are:

  1. What is happening
  2. What you need to do now
  3. Where to go for more information.

Messages must be succinct because of cell phone screen size and to increase the likelihood people read them, avoid jargon and abbreviations, and be composed for easy conversion into speech. While the Tufts community is tech-savvy, they are aware that not everyone is connected all the time therefore some messaging includes spreading the word. For many emergencies, especially life-threatening ones like violent criminal incident or tornado warning, content is pre-scripted by Tufts using sources such as the Massachusetts Department of Public Health.

In the case of the water main break, Massachusetts Emergency Management Agency sent out the initial message. When Geoff received the message on Saturday, May 1, he was in a command post on campus with police, fire, and EMS personnel where they were managing the public safety aspects of the Spring Fling concert. Because there was no reported danger or health threat, email was used initially. Later in the day, after Massachusetts Governor Deval Patrick declared a state of emergency, DPES fully activated the emergency alert system. In addition, email, word of mouth, Twitter, and the web were used to spread information.

I asked Geoff if there was concern about any health issues arising from students who drank tap water. He said that there was an FAQ that included the consequences of ingesting water. However the information they were receiving from the state agencies, and therefore their focus, was on the status of the water main break and what to do, such as the boil water order. Student feedback after the crisis ended was largely positive but included that there were terms, like boil water order, that they didn’t understand.

The Boston Public Health Commission Emergency Preparedness Process

To see how a public health organization responded, I looked at the Boston Public Health Commission (BPHC) website and spoke to Susan Harrington. She had guest-lectured in my Online Consumer Health course about their use of the web and social media and I wanted to see how they deployed them in an emergency like the water main break.

BPHC and its partners participate in emergency preparedness exercises to refine their coordination and response. In 2007, BPHC worked with the postal office on a large-scale exercise and last year they responded to the real-life H1N1 epidemic. Just last month, BPHC invited businesses, health care settings, and other partner organization to a Flu Review, where they discussed how BPHC responded, including what they did well, what didn’t work, and made recommendations as they prepare for the next flu season this fall.

How the Boston Public Health Commission Alerted Residents

Susan was in a city not affected by the burst water main on the Saturday the news was announced and received a call from work alerting her to the situation. Working in concert with federal, state, and city agencies, the Mayor’s Office and BPHC relayed important information and coordinated response efforts. The immediate issue was reaching people, which the BPHC first did through Twitter, Facebook, and their website. The Mayor’s Office posted information on its own sites and used its reverse 911 phone system to alert residents. Boston police officers drove up and down streets using megaphones and loudspeakers. BPHC set up conference calls with area hospitals and staffers were sent out to food-service establishments who needed to quickly adapt their procedures for the boil water order. Throughout the weekend, the Mayor’s 24-hour hotline added staffers to help answer any questions residents had. The Mayor’s Office and BPHC also called upon their partners, which included faith-based organizations, schools, and businesses, to spread the message through their own channels, and asked residents to inform the elderly who may not have access to the web and social media. The challenge was responding quickly and reaching as many people, wired or not, as possible. These techniques had been used to spread the word about H1N1 vaccine availability.

Twitter proved very effective at relaying up-to-the-minute news. While Twitter is global, people use the #Boston hashtag and other filters to get local information including traffic updates, event listings, and even local celebrity sightings. Not long after boil water order was issued, the Twitterverse was abuzz with the news – even dubbing a new hashtag for the emergency: #aquapocolypse. The most influential – and most followed – Twitter profiles were not only pushing out timely information, but passing on questions to BPHC, allowing them to respond and dispel any myths.

Creating Fact Sheets

No matter what the crisis, some people worry and they are the ones who especially need facts. One of the main BPHC priorities was posting information and fact sheets to the BPHC website. As a homeowner Susan knew what questions she had, but she had to consider the broad demographics of Boston in terms of where people live, the languages they speak, and their access to water.

BPHC worked with the Massachusetts Department of Public Health to create easy-to-read and culturally appropriate guidelines for the boil water order for Bostonians, including translating the fact sheets into multiple languages using a professional translation company with proofing by Commission staffers. These materials were later updated to reflect the lifting of the boil water order and subsequent flushing out instructions.

I asked Susan about the extent to which they date materials. In a crisis, knowing that an update is available and when it was issued is crucial. Throughout the flu response and boil water order, they posted dates on their websites, but in a non-emergency she said it is a challenge to keep an entire website updated. Fact sheets often are dated but other online materials may not be.

Health Issues and Disease Tracking

I taught a course in Shanghai once and remembered the advice I was given about the level of bacteria being higher in the tap water than Americans are used to. I slipped back into Shanghai-mode and remembered to rinse my toothbrush with bottled water and the myriad of other pointers I had been given. I was curious if Boston residents who drank tap water during the emergency expressed health concerns. Susan said that if pathogens were in the water, people may have experienced minor gastrointestinal illness after consuming that water. A greater concern would be for residents who are immunocompromised.

The BPHC uses a sophisticated surveillance system to track diseases in Boston. (In fact, Boston has been nationally recognized for its disease tracking system.) Health care settings report diseases to BPHC, which in turn, conducts a follow-up investigation and identifies the source of the illness, such as food contamination.  These disease patterns are tracked over time. In the case of the boil water order, there was no spike in gastrointestinal illnesses. Google has a less formal process of tracking disease patterns, collecting search phrases to find trends including the spread of illness. Google’s H1N1 flu trend matched up fairly well to Massachusetts’ trend lines.

Lessons Learned

Susan Harrington and Geoff Bartlett both thought the MWRA did a great job of letting people know what they knew, what they didn’t know, and what they were doing to find answers and repair the pipe. This was essential not just to inform people but to allay paranoia and fears given well-publicized situations like Toyota and Vioxx where information was not publicly disclosed in a timely fashion.

Some lessons learned about rapid health communication from the water main break are:

  1. Develop a rubric to assess the type of crisis as it impacts your institution. When the crisis is over, review, solicit feedback, and refine using what the military call an After Action Review.
  2. Identify and coordinate with partners in advance. In the case of the water main break, an impressive number of groups coordinated efforts seemingly seamlessly and, in many cases, behind the scenes. Ria Convery, Communications Director for the MWRA, told me that their response can be attributed to the 2-3 drills they perform every year “on a number of different scenarios ranging from dam failures to hurricanes to flu epidemics. Sometimes we perform a ‘tabletop’ exercise and sometimes we involve the whole universe of state agencies and run through an entire ‘event’. Every single drill, no matter the topic, provides an important opportunity for people to think through and be prepared for the worst case.”
  3. Prepare a communication plan for each type of crisis. While newspapers write obituaries for famous people in advance, you can’t anticipate all eventualities. However, you can prepare guidelines and immediately use them. Flexibility needs to be built in to communication plans, even to the definition of a life threatening emergency and when to select modalities that “wake you up” or more passive ones like email.
  4. Carefully construct messages to convey needed information succinctly. High-quality materials take time to produce because it’s important to first gather facts and then create and review accurate, appropriate, and easy-to-understand information, be they short like text and Twitter messages, or less constrained by length. Dating material is especially important in a crisis.
  5. Create messages that inform and allay unnecessary fears. Think like – or talk to – your target audience. Be careful about jargon, although everyone in Greater Boston quickly became conversant quickly with “MWRA” and “boil water order”, which are not in the common vernacular. Terminology was also an issue with H1N1: swine flu was the term adopted by the press initially, but it was distracting because of the association with pigs.
  6. Use social media, which can be both fast and local. Use emerging informal partners, who Malcolm Gladwell calls mavens, to facilitate the spread of messages in Twitter. But even when people are wired, they aren’t always online. The low tech megaphone and word of mouth works best for some.
  7. Use crises to educate people. While the water main break left many people with a heightened appreciation for their tap water, it was short-lived. However there may be a missed opportunity here to educate people about water sources, safety, and conservation as well as about emergency response.

June 8, 2010 at 8:47 pm 13 comments

How Celebrity Doctors Use their Online Presence to Communicate with Healthcare Consumers

Erin Dubich, a graduate student at Tufts, and I are doing a study about “celebrity” doctors who use their online presence to communicate with healthcare consumers.

Please help us by telling us which celebrity doctors you believe have an effective online presence and why: Dr. Gupta, Dr. Oz, Dr. Phil, Dr. Richard Besser, or another? We are interested in those who have Web sites, blogs, etc., unlike, say, Dr. Ruth, a celebrity doctor whose presence is not online.

The characteristics we are looking at are:

Basis of reputation (credentials, job, books, TV, etc.)
Website(s) featured on
Where seen besides website (TV, radio, books, syndicated column, etc.)
Topic(s) of advice/articles (general health, sexual health, etc.)
Type(s) of advice (ask the expert, interviews, etc.)
Why is the doctor an effective health communicator (timeliness, credibility, topics, reach to common concerns or fears, etc.)

If you have examples of celebrity doctors who you believe are not effective or exploit their fame or their position, we would like to hear that too.

Please post a comment or email me. We appreciate your help and will post our compiled results and conclusions.

January 12, 2010 at 7:40 am 11 comments

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

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 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

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

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

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.

March 7, 2008 at 9:36 am 5 comments

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

March 6, 2008 at 2:16 am 6 comments

If people don’t listen to their doctors, who do they listen to?

A WSJ Online/Harris Interactive Health-Care Poll found that a majority of U.S. adults believe that medical providers over-treat or under-treat their medical conditions. While sometimes this leads to getting a second opinion, other times it leads to not filling a prescription or getting a diagnostic test. The Kaiser Women’s Health Survey found that 22% of women “expressed concerns about the quality of care they got from their physicians or health care providers, compared to 17% of men. This issue was a particular problem for women in fair or poor health (40%).” The nurse practitioner in my doctor’s office once told me that more people take the advice of a stranger in the supermarket check-out line than her advice. There are many efforts to increase the number of people with health insurance, but the availability of affordable professional expertise does not necessarily mean that advice is taken.

I gave a keynote address on Online Communities: Innovative Notions of Expertise and Peer Learning, and started my talk by asking if I should use Weight Watchers or Atkins to lose 10 pounds. Saul Carliner, who was prepared to be a plant in the audience if no one else answered immediately, gave a compelling argument for the long term benefits of Weight Watchers. I then asked who agreed with him, and almost everyone did. One of the few people who hadn’t raised her hand said that diet and exercise need to be tightly coupled, but we agreed that she was only enhancing Saul’s response. I pointed out that we had (1) an opinion from one (somewhat anonymous) person and (2) the wisdom of crowds agreeing with him. I then asked how Saul’s advice would be looked at if (3) we knew that he had successfully lost and kept off weight or (4) we knew that he had a professional experience as a nutritionist. I went on to give a corresponding example on Amazon.com of how book reviews can fit into these categories. However, making a book selection has little cost, while health choices can have enormous consequences.

In What Doctors Don’t Know (Almost Everything), Kevin Paterson writes, “From the first day in the cadaver room and on, every medical student is drilled with this truism: ‘Medicine is both an art and a science.'” He goes on to write that “intuition is certainly an indispensable part of medicine. The body is so complex, and the ways it might go wrong so varied, that in the middle of the night, standing next to some fresh catastrophe, a doctor sometimes needs to generalize and to reduce very complicated problems to first principles. It is simply not possible to be rigorously intellectual and consult the available medical data about every single thing, all the time.”

Even if doctors don’t know everything, they know a lot. But if people don’t listen to their doctors, who do they listen to and are they receiving sound advice?

January 6, 2008 at 5:19 pm 3 comments


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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