Health 2.0 Europe: A Moveable Feast

Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building.

Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed.

The feast of ideas continued as I talked with Indu Subaiya, the moderator, and Gilles Frydman, Jamie Heywood, and Alexander Schachinger, three of my six co-panelists. I did as much research as I could on the other three panelists, but was a bit hampered by my inability to read German or Italian! I needn’t have worried — their presentations were fantastic (and in beautiful English).

I decided to use my opening remarks to dispel a couple of myths (the internet does not replace doctors, for example) and to hopefully spark a conversation (even if it was only in the audience members’ heads) about how it is time for Health 2.0 to evolve. Why?

Because nobody in that room needed to hear about the basics of patient networks.

Instead, it is time to talk about the power of health conversations informed by data, the self-experimentation that people engage in using information often found online, the impact of real-world experience on drug safety, and of course, participatory medicine.

Here’s what I said:

For those of you who don’t know me, I work for the Pew Research Center’s Internet & American Life Project, which studies the social impact of the internet. The best way to explain it is to say I am an internet geologist.  I measure patterns in the internet landscape. Here’s a very important distinction:  A geologist does not judge the rocks. She studies them. I don’t say one technology is better than the other. I don’t say one outcome is better than the other. I provide data to help you make those judgments.

All of my reports and data sets are available for free on the Pew Internet Project’s website and you can argue (or agree) with me about our findings on Twitter or on e-patients.net.

Today I’m going to give you just a few data points to think about as we discuss patient networks and participation in health care.

Pew Internet surveys show that about 8 in 10 American adults have access to the internet, but access varies according to someone’s age, education, income level, and health status.

Only about two-thirds of people living with chronic conditions go online, including people living with diabetes, heart conditions, high blood pressure, lung conditions, or cancer.

E-patients are listening to each other, consulting hospital reviews and doctor reviews, and posting which treatments work for them. Internet users living with chronic disease are more likely than others to look online for information about prescription or over the counter drugs – about half do so.

However, the internet does not replace doctors, nurses, and other health professionals.  93% of people living with chronic disease turn to a health professional for medical advice. The internet is a supplement. The internet is changing people’s relationship to information, which affects their relationship with health professionals, but we need to move past this notion that doctors should fear the internet’s influence any more than we need to fear the telephone.  This is evolution.

Part of the evolution is recognizing that patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Instead of marketing to your audience, ask them to participate. Our data shows they are ready.

I think Health 2.0 is at a critical moment in its evolution.  Ask yourself how you are evolving. Are you adapting to the shift to mobile? Are you adapting to the rise of participatory medicine?  What is your goal and which technologies, policies, and practices best fit that goal?  As we crawl out of the primordial soup of the first decade of Health 2.0, think about whether you want to be a creature that walks on land, flies in the air, or swims in the sea.

I would argue that we have two archetypes on stage:  ACOR is a community of cancer patients who communicate via email: in text, in narrative.  PatientsLikeMe is a community of people with life-changing diagnoses who also communicate in text, in forums, but also share and compare data.  Cancer may lend itself better to the ACOR approach, whereas ALS may lend itself better to the PatientsLikeMe approach. Both are founded on a principle of openness. But before we go farther, let’s make sure we  are aware that by choosing narrative, by choosing data, by choosing open sharing or by choosing closed systems, we are evolving in certain directions.

Pew Internet data shows that the deck is stacked against people living with chronic disease.  They are likely to be older, less educated, living in lower-income households. But if they can get online, they have a trump card, a secret weapon: each other.  If they can get access to the internet, they adapt to the opportunity.  Chronic disease actually makes it more likely that someone will participate in the online conversation, to consume user-generated content, to seek and share peer advice. If they can adapt, why can’t you?

What followed was, in my opinion, a stellar discussion and series of presentations (and you know I’m honest about failed panels). I can’t wait for the video to be posted (as long as they leave off any frighteningly close shots of my face – yikes those cameramen liked the zoom) but in the meantime the feast continues:

On Twitter:

Archive of Health 2.0 Europe tweets (PDF)

Follow related conversations: #health2eu #hcsm #hcsmeu #WhyPM

On blogs:

Matthew Holt: Health 2.0 Europe–My Take (tying lots of threads together)

Denise Silber: Health 2.0 Europe (quite a few posts)

David Doherty: Health 2.0 Europe Review (unvarnished, even stinging, so his praise is especially appreciated)

Colleen Young: Health 2.0: Why SharingStrength will be in Paris this spring (wins my award for Most Valuable Tweeter and she seemed to soak up more knowledge than anyone else I met at the event)

Please join me at the table. What’s next for patient networks? What are you building today that is different from what was available 5 or 10 years ago?  What should be preserved as we go forward?

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Comments

28 Responses to “Health 2.0 Europe: A Moveable Feast”

  1. RT @SusannahFox: My take on Health 2.0 Europe: A Moveable Feast http://bit.ly/aPv7YZ #health2eu #WhyPM #hcsmeu

  2. Indu Subaiya says:

    It was a delight (and a bit intimidating) to moderate this panel of ‘giants’- and I’m not just referring to how we looked on those close-ups! 3 points in particular:

    (1) both the qualitative and the quantitative data that patients are sharing in communities can be mined for feedback on quality, outcomes improvement, and research discovery — and organizations need to see what’s being fed to them right under their noses. PLM and I Want Great Care showed this.

    (2) We cannot underestimate the real-time ability of groups like ACOR to disseminate highly targeted, time-sensitive information – this is not just “stories” being told by the fireside, this is time-and disease-relevant and time in medicine can be life-saving.

    (3) The power of patient sharing will be truly unlocked when doctors share too. The value chain ought to begin in the doctor’s office, where providers treat patients as colleagues in a process. TRUE STORY. I left my doctor yesterday with 2 nameless pills. If I had not asked their name and what their side effects were, he would have felt no obligation to tell me! 2010, shi shi practice, Santa Monica, Los Angeles, California. Lots more work to be done!

  3. RT @SusannahFox My take on Health 2.0 Europe: A Moveable Feast http://bit.ly/aPv7YZ #health2eu #WhyPM #hcsmeu

  4. Fabulous post Susannah that will be read for a long time to come. Am including it on my blog’s recap of all post-conference articles.

  5. Je ne sais pas si Santé 2.0 est à un moment critique de son évolution mais je dirais que Santé 2.0 est en pleine mutation.
    C’est pour cela, que patients, communautés en ligne, acteurs de santé et politiques doivent s’unir pour une information non seulement de qualité mais accessible à tous.
    Merci à Susannah Fox pour cet excellent article.
    (Excusez-moi, si je vous réponds en Français mais cela me permet de répondre plus correctement et plus facilement)
    @kiwfranc

    • Susannah Fox says:

      Bienvenue, @kiwfranc! Si vous êtes assez courageux pour faire des commentaires, je suis assez courageux pour écrire ma réponse en français. Et j’ai l’avantage de Google Translate. S’il vous plaît excuser les erreurs!

      (Translation: @kiwfranc wrote:

      I do not know if Health 2.0 is a critical moment in its evolution but I would say that Health 2.0 is changing. That is why, as patients, online communities, health workers and politicians must unite to create information that is not only high-quality but accessible to all.

      And I wrote: If you’re brave enough to comment, I’m brave enough to reply in French. Plus I have the advantage of Google Translate to help me. Please excuse the mistakes!)

    • Bonsoir Francoise!

      Et merci pour ce commentaire! L’acces et l’utilisation des informations medicales en ligne pour tous reste un des grands problemes poses par l’explosion de l’internet et les tres grandes differences de facilites d’acces qui malheureusement suivent en parallele la situation socio-economique des individus.

      C’est, a mon avis, un probleme suffisamment important et difficile qu’il necessite l’intervention des gouvernements et des changements dans les legislations nationales. Nous sommes tres conscients du probleme avec Susannah et quelques grands scientifiques specialises dans le domaine de la sante publique.

      Peut-etre reussirons nous a ecrire un blog post sur le sujet chez Denise dans le futur relativement proche.

      • D’avoir invité Gilles en France à parler du “e-patient” même si le terme n’existait pas encore, en 2002, j’attends avec impatience que nous puissions exprimer notre vécu croisé de Français aux Etats-Unis et Américaine en France, et qui démontrera que l’être humain a les mêmes besoins et compétences de part et d’autre de l’Atlantique…”Demain Scarlett…” ;-)

        Having invited Gilles to speak in France in 2002 of “e-patients” before the term even existed in the US, I am impatiently waiting for us to express together our “reverse” experience as a Frenchman in the US and an American in France, experience which demonstrates that the human being has the same needs and competencies on both sides of the Atlantic…”tomorrow”Scarlett ;-)

  6. SusannahFox says:

    My take on Health 2.0 Europe: A Moveable Feast http://bit.ly/aPv7YZ #health2eu #WhyPM #hcsmeu

  7. The internet is really an immeasurable resource for those with chronic conditions because it enables them to find so much health information and to find other people with the same medical issues. Especially for those with more rare conditions, the ability to relate to someone and share first hand information is of considerable value. Without the internet, these relationships would only infrequently occur.

    • Without the Internet most people suffering from a rare disease would never meet another patient with the same disease in their lifetime.

      I suppose that for many of the orphan disease patients the main effect of the Internet is improved longevity because they can get the information that neither their family, friends or doctors know. As usual when it relates to orphan diseases, though, I have no hard data to validate this opinion.

  8. SusannahFox says:

    Inspired by patient networks led by @accarmichael @patientslikeme @healthcentral @gfry to say: Evolve http://bit.ly/aPv7YZ

  9. bacigalupe says:

    Health 2.0 Europe: A Moveable Feast http://is.gd/bzsvi by @SusannahFox (via @luisluque) #hcsmeu #hcsm

  10. Andrew Spong says:

    RT @SusannahFox: My take on Health 2.0 Europe: A Moveable Feast http://bit.ly/aPv7YZ #health2eu #WhyPM #hcsmeu

  11. matasanos says:

    RT @bacigalupe: Health 2.0 Europe: A Moveable Feast http://is.gd/bzsvi by @SusannahFox (via @luisluque) #hcsmeu #hcsm

  12. John Sharp says:

    RT @SusannahFox: Inspired by patient networks led by @accarmichael @patientslikeme @healthcentral @gfry to say: Evolve http://bit.ly/aPv7YZ

  13. Susannah, thank you for posting your presentation and sage words here for us to contemplate again. Indeed I was a sponge at the Health2.0 conference in Paris. There was so much valuable information being freely shared.

    I feel that the comments from Indu Subaiya and Françoise Soros are perfect dovetails to your post.

    I already see my wish list coming true as Health2.0 evolves:
    1. That healthcare professionals and patients (and those who love them) work together as equal partners.
    2. That the collective knowledge of patients sharing in online communities is being recognized and harvested as valuable data.
    3. That, with Internet access, patients can reach out to others and not be isolated with their illness.
    4. That accessibility and transparency continue to improve.

    • Susannah Fox says:

      Thank you, Colleen! That’s quite a wish list, but attainable given the energy we see in the patient community around already-existing social media tools and online communities.

  14. Susannah Fox says:

    Found a YouTube clip of my remarks in Paris in case you can’t wait for the non-handheld version:

    http://www.youtube.com/watch?v=12Yagai-d0o

    (Thanks r0wsbud, whoever you are!)

  15. [...] Health 2.0 Europe: A Moveable Feast (E-Patients.net): The slides Susannah Fox used at Health 2.0 Paris: [...]

  16. David Harlow says:

    Reading (better late than never) @SusannahFox: My take on Health 2.0 Europe: A Moveable Feast http://bit.ly/aPv7YZ #health2eu #hcsmeu #hcsm

  17. Hi Susannah,
    thanks for sharing the data. I posted your slides to my blog
    http://patient-centered-it.com/2010/05/13/are-patients-ready-to-use-internet-services/.

    I definitely share your opinion about the readiness of some patients using internet services. However these are either not existing or of poor quality. Good examples aside.

    Cheers Christian

  18. Phil Baumann says:

    RT @SusannahFox Health 2.0: Washington, DC (http://bit.ly/brbrC2) vs. Paris (http://bit.ly/aPv7YZ) #health2con #health2eu

  19. SusannahFox says:

    Extra credit: What's the point of Health 2.0? http://bit.ly/b3hfTY + A Moveable Feast http://bit.ly/aPv7YZ #DCWEEK

  20. [...] Health 2.0 Europe was alive with debate about government’s role in health and health care, including some heated exchanges about how to oversee the quality of online information. What if the NLM harnessed American ingenuity and the EU’s information quality focus? One answer: Pillbox [...]

  21. Chris Jones says:

    RT @ToughLoveforX "Good read to see the similarities of Health Care & Edu Care" http://ilnk.me/3ba0 .. ironic, #ecosys there last summer

  22. […] Health 2.0 Europe was alive with debate about government’s role in health and health care, including some heated exchanges about how to oversee the quality of online information. What if the NLM harnessed American ingenuity and the EU’s information quality focus? One answer: Pillbox […]

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