Among the most frustrating dilemmas facing patients – and physicians – is when doctors are unable to assign a specific diagnosis.  Just having a name for a condition can be remarkably reassuring to patients (and families), providing at least a basic framework, a set of expectations, and perhaps most importantly, an explanation for what the patient is experiencing.

Sara Wheeler, writing in the New York Times in 1999, poignantly described the experience of traveling through “the land of no diagnosis.”  Ten years later, the NYT featured a story called “What’s Wrong with Summer Stiers,” about another patient without a diagnosis – and about a fascinating initiative at the NIH, the “Undiagnosed Disease Program” – specifically created to meet this need.

Today, some patients and their families are taking this process one step further: when experts can’t help, perhaps the crowd can.

Around two years ago, Simon Turkalj’s wife – herself a physician — developed seizures in the first trimester of her fourth pregnancy.  Since then, she has suffered from frequent seizures at night, without obvious cause despite an extensive medical workup at a leading tertiary care center.

Frustrated, Simon decided to celebrate her birthday this year by giving her what he describes as “a different kind of gift – a diagnosis.”  At least he hopes so – and he’s relying upon the crowd (and more generally, open innovation) to deliver.

He has set up a Facebook page devoted to the diagnosis of his wife, and including links to all of her relevant medical history, data, and information, in hopes that someone will recognize the pattern, and offer a cogent explanation, a unifying diagnosis.

Facebook has been used before to diagnosis illness – for instance, this case of Kawasaki’s Disease; moreover, it seems like a pretty smart approach – assuming, of course, you don’t mind the conspicuous loss of privacy.

Most immediately, I hope someone finds a diagnosis for Simon’s wife; I also suspect it’s only a matter of time before a clever developer sets up a website devoted to crowdsourcing medical diagnoses (perhaps even offering prizes, InnoCentive-style); it’s even possible this is occurring already.

Beyond this specific use case, however, it’s also fascinating to think about the many ways in which the Facebook platform could be leveraged to both learn about health and improve health; the much-publicized organ donation initiative is probably just the tip of an exceptional opportunity here — particularly for extensive real-world measurement and for behavior modification.

For all the discussion about novel technologies in digital health, it’s quite possible that one of the most powerful technologies we have – certainly, one of the most promising enabling platforms – has been sitting right in front of us the whole time.

It’s an attractive opportunity that’s hard for anyone passionate about health not to like.

Addendum (July 1, 4:45p PDT): Thought it might be useful to reiterate here my response to a thoughtful reader comment below: In my view, it’s limiting to focus only on how Facebook is currently used in health (whether for diagnosis, such as the example discussed above, or for physician practice marketing, such as the reader example below).  Rather, thinking a bit more broadly, it’s exciting to contemplate whether — using a combination of existing data (which Facebook undoubtedly collects) and compelling user engagement (which Facebook undoubtedly offers) — there are untapped opportunities to learn more about health and to drive improvements in health, perhaps in combination with additional applications or consumer devices.

David Shaywitz is co-founder of the Center for Assessment Technology and Continuous Health (CATCH) in Boston.  He is a strategist at a biopharmaceutical company in South San Francisco. You can follow him at his personal website. This post originally appeared on Forbes.

Share on Twitter

4 Responses for “Why You Are (Probably) Already Using The Most Powerful Digital Health App”

  1. Fran Stevens, MD says:

    Wishful thinking

  2. john says:

    @ Fran – you miss the point.

    Shaywitz isn’t drinking the kool-aid.

    At this point, the social network is a utility. Dr Shaywitz is showing us a good use of a simple technology. I can think of at least ten similar experiments that could really help people – right now, today.

    - Get volunteers for my clinical trial
    - Find an organ donor
    - Help me cover my health care costs
    - Connect me with a second opinion
    - Win support for government funding of my disease or new treatment
    - Highlight an abuse in the system
    - Fund my experiment
    - Compare notes with professional colleagues (physicians)
    - Understand my treatment options and choices with specialists.

    Go take a look at the communities and individual pages on Facebook and other social networks before you pass judgement.

    / j

  3. Susannah Fox says:

    While chatting with a clinician about how his practice uses Facebook, I came up with the following description of the current state of affairs: “awkward, but great.” It’s awkward that patients, caregivers, and clinicians are using FB to connect with each other for information exchange, but it’s great that they are doing so. Apply to your favorite social tool.

    Hopefully the research that my organization, the Pew Internet Project, is conducting is useful to this conversation. Note: we don’t have a dog in the fight – we collect data on where things stand. I invite you to check out:

    Peer-to-peer healthcare
    http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx

    Social networking sites and our lives
    http://www.pewinternet.org/Reports/2011/Technology-and-social-networks.aspx

  4. Wonderful web site, previously been searching forever
    and a day for ideas on the very best rattan furniture pieces for our home and
    in our garden. This site seriously helpedgreat blog some great info here

    my blog – port royal rattan (http://www.cgaming.de/)

Leave a Reply

FROM THE VAULT

The Power of Small Why Doctors Shouldn't Be Healers Big Data in Healthcare. Good or Evil? Depends on the Dollars. California's Proposition 46 Narrow Networking
MASTHEAD STUFF

MATTHEW HOLT
Founder & Publisher

JOHN IRVINE
Executive Editor

JONATHAN HALVORSON
Editor

JOE FLOWER
Contributing Editor

MICHAEL MILLENSON
Contributing Editor

ALEX EPSTEIN
Director of Digital Media

MICHELLE NOTEBOOM Business Development

MUNIA MITRA, MD
Clinical Medicine

Vikram Khanna
Editor-At-Large, Wellness

THCB FROM A-Z

FOLLOW US ON TWITTER
@THCBStaff

WHERE IN THE WORLD WE ARE

The Health Care Blog (THCB) is based in San Francisco. We were founded in 2004 by Matthew Holt and John Irvine.

MEDIA REQUESTS

Interview Requests + Bookings. We like to talk. E-mail us.

BLOGGING
Yes. We're looking for bloggers. Send us your posts.

STORY TIPS
Breaking health care story? Drop us an e-mail.

CROSSPOSTS

We frequently accept crossposts from smaller blogs and major U.S. and International publications. You'll need syndication rights. Email a link to your submission.

WHAT WE'RE LOOKING FOR

Op-eds. Crossposts. Columns. Great ideas for improving the health care system. Pitches for healthcare-focused startups and business.Write ups of original research. Reviews of new healthcare products and startups. Data-driven analysis of health care trends. Policy proposals. E-mail us a copy of your piece in the body of your email or as a Google Doc. No phone calls please!

THCB PRESS

Healthcare focused e-books and videos for distribution via THCB and other channels like Amazon and Smashwords. Want to get involved? Send us a note telling us what you have in mind. Proposals should be no more than one page in length.

HEALTH SYSTEM $#@!!!
If you've healthcare professional or consumer and have had a recent experience with the U.S. health care system, either for good or bad, that you want the world to know about, tell us about it. Have a good health care story you think we should know about? Send story ideas and tips to editor@thehealthcareblog.com.

REPRINTS Questions on reprints, permissions and syndication to ad_sales@thehealthcareblog.com.

WHAT WE COVER

HEALTHCARE, GENERAL

Affordable Care Act
Business of Health Care
National health policy
Life on the front lines
Practice management
Hospital managment
Health plans
Prevention
Specialty practice
Oncology
Cardiology
Geriatrics
ENT
Emergency Medicine
Radiology
Nursing
Quality, Costs
Residency
Research
Medical education
Med School
CMS
CDC
HHS
FDA
Public Health
Wellness

HIT TOPICS
Apple
Analytics
athenahealth
Electronic medical records
EPIC
Design
Accountable care organizations
Meaningful use
Interoperability
Online Communities
Open Source
Privacy
Usability
Samsung
Social media
Tips and Tricks
Wearables
Workflow
Exchanges

EVENTS

TedMed
HIMSS South x South West
Health 2.0
WHCC
AHIP
AHIMA
Log in - Powered by WordPress.