Participatory Medicine at NIH

I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45 minutes of discussion.

It was a blisteringly hot day, so we ended up having 50 people in the room and about 50 more watching the videocast from the cool of their offices on the NIH campus. The video is a little blurry, so I recommend treating it like a podcast and downloading the slides separately, but you might enjoy hearing how we wove together our research on digital footprints, Web 2.0, and health.

Here is a sample of the excellent questions we were asked (and our attempts to answer them):

Is “do-it-yourself” medicine happening online as more people use the internet to get health information?
We have asked respondents about health insurance status over the years to see if people are self-diagnosing instead of going to a doctor. We have not seen evidence for that. We see people using the internet as a supplement, not a substitute.

What about people who are offline? Are they accessing any information online?
The Pew Hispanic Center is about to come out with a study showing that most Latinos get health information from broadcast media – TV and radio. We also see “second degree” internet access – someone in the household may have access and perform the information searches on behalf of a family member who is offline.

What about Baby Boomers? What do you see in the future for health and medicine as the population ages?
First, be careful when you hear people talking about how seniors are the “fastest growing group online” since most of the growth comes from boomers aging in to the 65+ demographic, not people in their 80s and 90s suddenly going online.

Boomers are likely to hang on to their internet connections as they get older and are participating in a wide range of online activities – including social networking sites, much to the chagrin of their kids. (See: “Generations Online” report.)

Boomers could be a big driver behind participatory medicine as they age, as they begin to deal with more chronic conditions, and as we start to face a capacity challenge in medicine. Participatory medicine could help fill in the gaps.

What about information reliability?
In 2002, we worked with the Medical Library Association on questions about information quality and we returned to that topic in our 2006 study, making some headlines about how most internet users do not check the source and date of health information online.

However, I’m going to start to recant my previous testimony because there was a study done in 2006 by HHS showing that only 2-3% of health sites display these two quality indicators. I’ve been documenting the “failure” of internet users, but it makes sense that they have stopped looking for a needle in a haystack.

Plus, e-patients tell us that patient communities are able to vet and distribute the best information. You can use those e-patients as your agents – to redistribute your information.

What is the basis for suggesting we publish in HTML over PDFs?
PDFs lock up the information in one pretty document, in one format. HTML can free it.

The first part of any outreach campaign is to make the information accessible, whether it is on a small-screen mobile device or to people who want to grab content and paste it into an email. If you want to recruit young Latino and African American men for a clinical trial, for example, make sure your information is mobile-phone accessible. (See: “Mobile Access to Data and Information” report)

What are the racial/ethnic differences in internet usage and in “e-patient” activities?
The Pew Internet Project’s sample sizes for health surveys have been too small to do in-depth analysis on race/ethnicity and economic status. In addition, all of our health surveys have been conducted only in English. As we know, the profile of the English-speaking Hispanic population is very different from Spanish-dominant Hispanics. (See also: “Data and Insights on Minority Populations.”)

What are your thoughts on the potential for mobile smart phones (a la iPhone) to drive consumer health-related applications in health promotion, preventive medicine, and clinical medicine in the ‘near’ future for the masses (including the at-risk, isolated groups mentioned in your talk)?
I’m just pointing in a direction, to show that 50% of seniors have a cell phone, while only a third have internet access and young Latino men are “mobile centric.” Make sure that what you’re doing is easy to email, easy to text, easy to read on a mobile phone.

The list of topics we touched on goes on: the AHRQ innovations site; Bo Xie’s work with seniors at the University of Maryland; the HINTS survey; online banking trends as a tip for the health insurance industry; the persistence of bad or wrong information online; the challenges of participating in Wikipedia; surveys of doctors by Manhattan Research.

If you have questions or reactions to the any of the above, please post them in the comments!


Posted in: trends & principles





11 Responses to “Participatory Medicine at NIH”

  1. Judith Feder says:

    Susannah, thanks for sharing the synopsis of your session, and your slides. “Participatory” medicine is resonating strongly with me in recent days, as I begin to digest the results of a survey I was lucky enough to field in collaboration with Bret Shaw of U of Wisconsin, and Andrea Meier, just retired from UNC. These observations are preliminary and unofficial, but an “a ha” for me was that the e-patients who answered the survey tended to feel comfortable finding a base level of relevant healthcare information online. Where the need/interest level jumps is in a couple of areas: under-reported or “rare” side effects, and a range of participatory/interactive capabilities, such as rating providers; buying products and services that help manage symptoms and improve quality of life. And, as I’ve found throughout my sojourn in the world of e-patients, we are highly motivated to share our knowledge and experience with the broader healthcare community, if it will help other patients, contribute to clinical knowledge, or otherwise advance understanding of disease.

  2. Susannah Fox says:

    Thanks, Judy! I can’t wait to hear more about that research project. I’m very interested in how circumstances change someone’s internet use.

    The Pew Internet Project has documented a broadband effect: when someone upgrades from dial-up to broadband at home, they are more likely to turn to the internet to answer questions or solve problems. We have also seen a once-burned, twice-shy malware effect: users who have had a bad experience are more likely than others to curtail their online adventures, to stop downloading music, visiting unknown sites, and other “risky” behaviors.

    Typologies are another way pollsters have documented differences among groups, such as tech users or red vs. blue politicos.

    My small attempt at this was the E-patients With a Disability or Chronic Disease report, but I would like to take this further. What would a health typology look like?

  3. Susannah Fox says:

    Note: We accidentally deleted a comment from Dr. Harlan Weinberg, medical director of the intensive care unit at Northern Westchester Hospital, Mt. Kisco, NY, and author of Dr. Weinberg’s Guide to the Best Health Resources on the Web.

    He wrote about how “the concept of ‘Participatory Medicine’ is here to stay and growing as more individuals are using the internet for health information access. One of the most important factors for me and I hope others, is the need for quality information, presented by authorities in their field.”

    My response:

    Thanks, Dr. Weinberg, I appreciate your comments.

    You might be interested in the conversation happening over at both the Center for Information Therapy blog as well as Dan Hoch’s post, Information Overload: Problem or Not?. I would also like to get your take on the views expressed in Gilles Frydman’s post from March, Trusted doesn’t mean accurate. Safe is almost certainly stale.

  4. Harlan R. Weinberg, MD says:

    “Knowledge for Your eHealth” — Dr. Weinberg’s Guide to the Best Health
    Resources on the Web (Harper Collins-2008)****

    The practice of medicine has been changed forever, both for patients, their
    families and health professionals. The internet has been able to deliver
    an information database that is expansive and diverse. But, to use this
    new resource, the users must be informed about the information being
    evaluated. If you decide to research a health topic, I believe that you
    must be concerned with at least two very important characteristics. First,
    the source of the information must be reliable and evidence-based. The
    authors of the information must be respected within the professional
    community. Remember, unreliable and misleading information may be
    dangerous to a patient’s care. Secondly, the timeliness of the information
    is critical to it’s validity. Information that is not updated or reviewed
    may not be current with accepted guidelines or standards of care. Other
    aspects for information review may also include, the presence of an
    editorial board, the impact of advertising and sales on the information
    being presented, listing of other resources or links that complement the
    information on the site…Remember that personal communications are a great
    way to compare and exchange information and experiences, but everyone’s
    medical condition may be different and what works for me may not be helpful
    for you. The internet has provided for “Participatory Medicine” that will
    allow for a greater exchange of ideas and questions for the patient and the
    physician. Use the internet wisely as you search your medical experience
    but always allow for an open doctor-patient relationship, so that the
    important questions can be discussed. As we evolve into this new
    electronic frontier for medicine, we must become educated on the strengths
    and weakness of the medical internet.
    I have recently published my book with Harper Collins, “Dr. Weinberg’s
    Guide to the Best Health Resources on the Web” which will help to direct
    both patient and professional to educational, academic resources that are
    reliable and quality driven. Finally, the internet should NOT become your

    The internet is NOT a substitute but an alternate resource that will be a
    valuable tool for everyone to use.

  5. Susannah Fox says:

    Thanks for re-posting, Dr. Weinberg! Your points are well taken.

  6. […] me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the […]

  7. SusannahFox says:

    It's no surprise to me that NIH is opening up to social media, in both communications & research. From '08:

  8. Lee Rainie says:

    RT @SusannahFox: It's no surprise to me that NIH is opening up to social media, in both communications & research. From '08:

  9. RT @SusannahFox: Ino surprise to me that NIH is opening up to social media, in both comms & research. From '08:

  10. Amy Romano says:

    @SusannahFox – reading and thinking your advice to "use e-patients as agents" set stage 4 #nihvbac

  11. […] me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the […]

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