The Disconnect Between Patients and Doctors

March 7, 2008 at 9:36 am 5 comments

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, 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 and, both covering all diseases and conditions. Other sites are more specialized, such as Leroy Sievers’ heavily commented cancer blog at, the very focused discussions on the Road Back Foundation bulletin board, and the well-segmented and very active community message boards at 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.

Entry filed under: health, online health communities. Tags: , , , , , , , , , , , , .

Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites Using MySpace for Health Information: Where is the Empathy?

5 Comments Add your own

  • 1. Scoliosis of the Spine  |  September 28, 2010 at 10:26 pm

    Hi Lisa, I love your blog!. I think you say many of the things that many of us know but either chose to ignore or dare not speak in public!. Keep up the good work.


  • […] about a disease, the internet is an easy place to turn for information and support, in fact, 80% of people in the US who use the Internet search for health information for themselves or a loved…. However, it is hard for many people to know what to search for or what to call a disease, and […]

  • 3. Dr Aniruddha Malpanio  |  May 4, 2008 at 10:24 am

    I feel the healthcare system today is sick because it is doctor-centric. Healthcare is fragmented and disorganized and there are too many specialists , most of whom have tunnel vision. In order to reform the healthcare ecosystem , we need to put patients at the center ! We believe that patients are the largest untapped healthcare resource !
    Patients ( or their relatives and friends) are : intelligent and capable; and because they have a lot at stake , they are motivated to get good health care and will be willing to invest time and energy if given the right tools to ensure a good outcome.

    We need to provide the tools directly to patients !

    I feel there are 4 major influences which will help patients to regain control over their healthcare.

    1. Patients will keep their own medical records using a PHR ( Personal Health Record)
    2. Information Therapy can be prescribed to them, tailored to their needs, based on their medical problems captured in the PHR
    3. Web 2.0 technologies will allow them to form social communities to help and support each other
    4. We can deliver this information to them 24/7 through their mobile, wherever they maybe, whenever they need it !

    Once doctors learn to prescribe information, a lot of these disconnects will disappear ! Patients would much rather get information and learn from their doctor ( which is derived from the word, “docere”, which means to teach) , rather than from a website !

    Dr Aniruddha Malpani, MD
    Medical Director
    HELP – Health Education Library for People
    Excelsior Business Center,
    National Insurance Building,
    Ground Floor, Near Excelsior Cinema,
    206, Dr.D.N Road, Mumbai 400001
    Tel. No.:65952393/65952394

    We help patients to talk to doctors !
    World’s largest free health library

  • 4. Hal Miller-Jacobs, UsabilityCoach  |  March 7, 2008 at 9:26 pm

    There are some doctors who do consider what their patients may be looking at on-line. When redesigning the cancer information site for the National Cancer Institute (NCI), we interviewed doctors who would check the NCI site just to see what the site is telling patients. This finding plus other evidence led to a site design whereby information for consumers and informarion for medical professionals were placed a single click away.

    As Lisa points out, doctors need to be more proactive in knowing and using what is available on-line to better assist and guide their patients.

  • […] Read the rest of this great post here […]


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Lisa Gualtieri, PhD, ScM

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


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