Privacy can kill, openness can heal

If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox:

I prefer to turn the question around now and look at the benefits of publicness that we lose when we make something unnecessarily private. I’ve said that revealing my prostate here brought me great value: support, links to sources of information, incredibly candid and helpful previews from patients who’ve gone before, and the opportunity to spur others to check for the disease. Without revealing my cancer in public, I’d have received none of that benefit. I also argue in WWGD? that there’s value in the aggregation of our knowledge: if we all chronicled what we were doing 24 hours before the onset of my other condition, heart arrhythmia, would doctors find new patterns? If we all shared and could analyze our repair records for our Toyotas, would we surface dangerous flaws earlier? Not revealing such data may indeed someday be seen as antisocial.

The first time I met Gilles Frydman, I asked him about ACOR‘s privacy policy. He shrugged and smiled, “Our policy is that you have no privacy.” Social sharing on the ACOR listserves is expected, if not required. That prepared me for meeting Ben & Jamie Heywood, whose ferocious belief in openness has found expression in the PatientsLikeMe platform.

Ben, Jamie (it turns out), Gilles, and I will be on a “Patients and Online Communities” panel together at Health 2.0 Paris (along with four stellar EU panelists – check the agenda). It’s a hugely broad topic and I’m already thinking about the issues I’d like to discuss (including openness, health data rights, and whether consumers really understand the choices they make). What else should we talk about?

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64 Responses to “Privacy can kill, openness can heal”

  1. @marinic says:

    “whether consumers really understand the choices they make”
    your above proposed topic brings in the doctor-patient relationship because everything starts with a diagnosis and how this diagnosis is communicated to the patient, next how the patient understands available therapies, and instructions which can be complicated. And what about informing patients about no hope, i.e terminally ill?
    What will make doctors spend the necessary time to explain disease, diagnosis, therapies? Usually a doctor’s visit finishes in max 15-20min.

    • Susannah Fox says:

      Oh good, an easy question to kick things off :)

      The good news is that Pew Internet has found that most people do rely on a health professional for medical advice. People living with chronic conditions are esp. likely to say that, and to take their health research seriously.

      The bad news is that appointments can be rushed, if you can get one at all, and people need to tap other resources, such as online patient communities.

      I’d love to ask the panel: How does your community *specifically* fill the gap? What topics are your members expert in?

      As for who is best at communicating treatment protocols or supporting someone who has a terminal diagnosis? Two more great questions, to say the least. Thank you!

      • @marinic made a statement that assumes that most doctors know what they are talking about. That is certainly not what I believe after running ACOR for close to 15 years.

        ACOR has helped save MANY lives by simply letting know new subscribers, usually newly diagnosed, that what their doctor has told them either makes little sense or show limited knowledge about their disease.

        Improving outcomes for all those suffering from unusual medical conditions will require a real change of mind. Doctors have limited knowledge, just like all of us have in our field of expertise. Great doctors accept and embrace this limitation and are able to direct their patients to more appropriate specialists much faster than the significant number of mediocre doctors.

        e-patients have it easy. Diagnosing “mediocrity in medicine” is pretty straightforward and easy to solve: change doctor and make an appointment with one of the few tried and true specialists, that will invariably be regularly mentioned in the online community for your disease.

  2. Since you have a wider audience than I will ever have, I’d love it if you’d talk a bit about how hermeneutic of suspicion seems pervasive within the healthcare industry (yes, reflecting the larger culture)and how this imperils participatory anything.

    • Susannah Fox says:

      Can you write more about what you mean, Meredith? I’ve been cooped up at home for seven days because of the blizzard, so I’m suspicious of everyone, but I’m not sure I have a good sense of what question you’d pose to the panel.

      • Gee, being cooped up for days makes me feel all cozy and safe! TMI? Okay, what I mean is that in the US, we tend to come from a place of suspicion/distrust that is not the same as a healthy critical inquiry.

        IF my assessment is accurate, then how does this world view frame (or perhaps over determine?) what’s considered either “openness” or “privacy”? What has to change before we can get our “own damn data”?

        Am I making any sense? If not, then I really ought to stop responding to blog posts until I’ve managed to get more sleep!

      • Thanks, Meredith – I was thrown for a loop by “hermeneutic of suspicion,” even after googling it.

        It’s a great point – distrust/suspicion that’s different from a clear-headed critical inquiry.

        I really hope American citizens can evolve in 2010 away from kneejerk condemnations of anyone with a different opinion. I hope we can start to see the harm it does to rationality. Anger (reptilian brain) seems to be the political weapon of choice these days, and though it’s effective, people seem to have forgotten that decisions made in anger rarely involve effective thought (which does NOT come from the reptile view).

        ….Boy, imagine a Hulk-style movie where we see people start turning into lizard-people as they get angry.

  3. Anonymous says:

    Talk about how openness can cost you your job, life insurance and a marriage. These issues are not black and white, so everytime I see them portrayed as such, I become saddened.

    • Susannah Fox says:

      I absolutely agree, which is why I almost put a question mark at the end of this blog post’s title. I decided it was too squirrely to do so and anyway, I’m paraphrasing Jeff Jarvis, who is a champion of openness.

      What’s fascinating to me is to watch people’s reactions to any service which requires openness: Do they use their real names (as Gilles insists is necessary)? Or do they set up a separate identity?

      What question would you ask the panel to put each one of them on the spot about this not being a black-and-white issue?

  4. My question – and I think it’s fundamental: Whose data is it? Who has the right to control it?

    I thank Jen McCabe for hammering this into me (gently but firmly) last September. We were discussing the Health Data Rights declaration, which she declined to sign – because it stopped short of hitting on the pivotal, foundational point: it did not declare “This data is MINE. The point is not that you LET me have it – it’s mine to begin with.”

    Today I was interviewed by staffers from the FTC who are working on health data privacy issues. They discussed people who adamantly insist that we have *no right to keep our data private.* What kind of fascism is that?

    I know someone who was raped, and another who had a very emotionally painful miscarriage. Neither wants that information to have ANY chance of getting out; they feel it’s private. Who are we to say “Tough, for the greater good, we’re takin’ it”?

    And I realized I now agree with Jen: at its root, it really is an ownership issue. I reject the idea that the lab who owns my data should LET me see it; I think we ought to legislate that it is mine, and I’m letting THEM see it, and they darn well better give it back. If I want to donate it to research, I will.

    • I am exceptionally interested in Dave’s comment about Jen’s insistance that “the data is mine”. We indeed had fairly intense conversations about this point while we were working on the Declaration of Health Data Rights wording. I started from Jen’s position but ended the weekend with a fairly different position. Of course the data is extracted from your body and so you own it. But it is also true that the data would never be created/produced without the input and expertise of other participants, all the labs and health care professionals.

      What if the optimal way to look at this is that healthcare data ownership must evolve into a model of shared ownership? That’s the way I see it and that’s why I accepted a less restrictive Declaration than the one I originally wanted.

  5. SusannahFox says:

    Snowed in but looking forward to Paris: http://bit.ly/aolNPF (shout-outs to @jeffjarvis @gfry @patientslikeme @health20paris)

  6. ePatientDave says:

    Miffed: my roasty-toasty comment on @SusannahFox post "Privacy can kill…" http://is.gd/8cxJD (Check it out, @JenSMcCabe)

  7. John Sharp says:

    @SusannahFox post "Privacy can kill, openness can heal" http://is.gd/8cxJD

  8. [...] What You Call Health 2.0? – DiabetesMine: the all things diabetes blog 3 Tweets Privacy can kill, openness can heal | e-Patients.net If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) [...]

  9. ben says:

    Privacy is one of the thorniest and most annoying barrier-forming problem in american medicine. It manifests itself in all kinds of ways, especially in research.

    The common rule (title 45) which is the law that mandated the creation of institution-specific internal review boards (IRBs) requires that those IRBs make reasonable allowances for the “provisions to protect the privacy of subjects and to maintain the confidentiality of data.” (http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm)

    [Editor's note Oct 31, 2012: a reader reports that link is dead.]

    The problem is that different IRBs interpret this differently, some in VERY VERY annoying ways. I’ll give you one example: Say that I am participating in a clinical trial. Typically, lab results are collected at the treating site, which means they are a part of my medical record. But if that particular trial happens to use quest diagnostics to obtain outside labs then that information can be considered to be collected “for research purposes” and CANNOT become a part of the medical record. I’ve seen institutions that behave this way.

    Privacy laws (HIPAA and title 45 in particular) create data barriers which are ostensibly to protect “privacy” but in fact prevent the free flow of health information even for those who SHOULD be able to access it.

    I understand completely though the reason for these things. Say you are diagnosed with an emotional or mental disorder, and then years later discover that the problem was hormonal and your taking of lithium that whole time was unnecessary. It’s illegal to remove a diagnosis from a patient’s medical record, so the patient rightfully wants to avoid any new doctors seeing that incorrect diagnosis.

    On the other hand it means that if I find out that a patient has HIV because he or she is participating on a research study I am barred from informing that patient to protect her “privacy.”

    It’s a big mess!

    • Susannah Fox says:

      Ben,

      I’ve been thinking about this comment since it was first posted. Thanks so much for bringing up the research issues, since they are central to what some patient communities are doing (or hope to do).

      If you haven’t already, I recommend reading two articles from the launch issue of the Journal of Participatory Medicine:

      The Field-Building Role of a Journal About Participatory Medicine and Health, and the Evidence Needed, by Lawrence Green

      Key line:
      “…the participatory process will not lend itself easily to conventions of randomized controlled trials.”

      http://jopm.org/index.php/jpm/article/view/16/31

      Patient-Driven Research: Rich Opportunities and Real Risks, by Gilles Frydman

      Key lines: “Acceptance of [patient-driven research] as valid clinical research requires validated methodologies and tools, democratization of data, ethical oversight, and immediacy. Without these critical drivers, such research will continue to be marginalized and its benefits available only to the activated minority.”

      http://jopm.org/index.php/jpm/article/view/28/18

  10. SusannahFox says:

    Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #hcsmeu #hcsm #WhyPM

  11. RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #hcsmeu #hcsm #WhyPM

  12. Susannah Fox says:

    Naturally-occurring social networks are, so far, much more popular than patient communities like the ones featured on the Health 2.0 Paris panel.

    Pew Internet/CHCF research shows that two-thirds of e-patients talk with someone else about the health info they find online, most often a friend or spouse. Just 7% of internet users “participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems.” (That’s the survey question wording – if you think it can be improved, let me know.)

    What is the case for joining a patient community rather than sticking with the advisors you know? Yep, it’s a softball question.

    Why haven’t more people joined patient communities and what strategies can be deployed to convince them? That’s the tougher question.

    • “Why haven’t more people joined patient communities and what strategies can be deployed to convince them? That’s the tougher question.”

      When (if) you get any insights into this tough question, please let me know.

      I think healthcare professionals and organizations worry more about privacy than do patients.

    • Jen S. McCabe says:

      Amen to that Susannah -

      I think there’s a good reason ‘general’ or ‘big box’ social networks are gathering so much traffic and attention, and why ultimately the health data we share here may have more value than the current information shared on ‘closed loop’ health 2.0 communities (at least for ‘primary’ or preventive medicine and care).

      Namely, they encourage us (aka ‘users’) to share the totality of our lives minute details, not JUST the ones that are relevant in our partial role as ‘patients’ (if we consider that patienthood is a PORTION of our identity, not its summation).

      The thing is, on these larger networks (Twitter and Facebook, Foursquare, etc) we’re sharing things about our life that people (us included) may not even consider to be ‘health’ or ‘health 2.0′ oriented, but that have massive impacts on our health and wellbeing over time (fitness, alcohol use, social network support, mental health and mood, etc).

      We’re already self-reporting.

      In health 2.0 networks (and health records in general, including current gen PHRs) the self-entry problem has us all crawling on hands and knees begging consumers to enter semi-structured text.

      This is about as fun and engaging as applying for a Drivers’ License renewal at the DMV, and less useful.

      Here’s an example of why I think closed networks, even those with high utility like CureTogether, Patients Like Me and ACOR, even our current incentives, won’t work for ‘preventive’ care (or the 99% of that stuff that happens to you outside the hospital walls).

      CureTogether, PatientsLikeMe, ACOR, all these work in the POST-diagnosis phase.

      Then they are absolutely vital (and I love all these communities – they’re doing amazing, seminal work and paving the way).

      But what about all the stuff we do that matters in the PRE-diagnosis phase?

      Trying to get us to talk about (and type in this kind of stuff) is near impossible.

      Some employers are trying to pay us to fill out ‘health assessments’ online by dangling drawings, micropayments, or 5$ gift cards. But because the value of my time spent filling these things in is subjective, and falls within the personal context of my daily life where I may have 80 thousand kajillion other concerns, sometimes, no matter my income level, I’ll take that carrot, and sometimes it’s not enough to move me to ‘action.’

      But of course this all may be a moot point, because again, we are ALREADY SELF ENTERING.

      We’re doing it in tweets.

      We’re doing it on blogs.

      We’re doing it in mobile apps and ‘lifestyle’ apps and social games.

      We are building our own life streams outside medicine, and outside healthcare.

      The big question is, who will be able to gather these ‘dribbles’ of experiential data I’m leaving behind like a trail of personally relevant breadcomes and transfuse them back into the care system in a way that is ALSO clinically relevant?

      This is the holy grail, and we’re still a ways off. But examining what actually motivates us to change our behaviors (hint, it’s not data. It’s not process. It’s not even nice incentives – it’s the PEOPLE around us – our existing social graph) is where we’re headed.

      I have a feeling in the next 3-5 years there will be plenty of companies taking a closer look at how to make healthy behaviors socially contagious.

      At least I hope so, because as communal animals the best chance we have to ‘save’ healthcare comes when we start saving ourselves, and investing in each other.

  13. Tom O'Brien says:

    The topic of communities and health is always interesting – especially when approached from the professional provider perspective.

    The fact is that people are out there talking, helping, supporting and doing. Most of the conversation is condition centric (not surprising). Surprisingly, main motivation in health communities conversation is “Feel Knowledgable”

    The top peaking emotions are Fear, Worry/Stress and Happy.

    I think I’m going to put up a blog post and charts about this so people can see more.

    Tom O’Brien
    @tomob
    MotiveQuest LLC

  14. “How does your community *specifically* fill the gap?” is a good one, and taking it one step further, “beyond diagnosis and treatment options: does your community offer something valuable that won’t be found in a doctor visit?”

    • Susannah Fox says:

      Thanks, Lynda, that is an excellent question to pose to the panel.

    • Tom O'Brien says:

      Hi Lynn:

      My advice for anyone wanting to build a community . . .

      First go out there and see if there is already an existing community organized around the condition of interest. If there is – they ask yourself why you want to build a competing patient community rather than contributing to the existing one.

      In this people-centric medium, you have to put the community motivations first. If you don’t do that the community will fail.

      http://tinyurl.com/685e3x

      Automotive is no different from healthcare in this regard.

      TO’B

      • Tom, that is an excellent point. The “build it and they will come” approach doesn’t usually work with community building without a core group of committed users who form that “critical mass” to get things rolling.

        And if you think back to that BMJ article about self-correcting behavior in an online community, and Dr. Val’s fabulous limerick from epatcon, it’s pretty easy to see that a community needs to be lively and vibrant in order to have that self-correcting behavior that is so important. Having competing groups and splinter groups can really make all of the communities about the same condtion or interest less valuable.

  15. Why haven’t more people joined patient communities and what strategies can be deployed to convince them?

    Dang! I wrote out an extensive comment which disappeared into cyber-space, so I’m going to try this again — more succinctly.

    1) Perhaps if the survey question were changed on to delete “problems” and simply asked about “personal or health issues,” you might get a better idea of what falls into the domain of health. One person’s health “problem” may simply be an “issue” or even something to ignore by another person, especially if the condition is lifestyle threatening rather than life threatening.

    2) To underscore Jen’s point and based on no quantitative data but merely social theory and qualitative data, I’d say patients are more like to join organically emerging networks of known participants than fully constructed communities.

    3) Strategies for developing patient communities must, I say, be rooted in anthropological and sociological wisdom and data about how people behave in groups (i.e., social behavior), including:

    a) Understanding and using language systems that participants understand and use.

    b) Accounting for the participant’s location in the development (or not) of identity relative to the illness/disease. Personal example: I opted out of patientslikeme.com because my need(s) for support as someone with 20+ years of an illness, are better met via DMs on Twitter with others with similar long term experience.

    c) Accounting for how individuals and a community might define privacy. For example: 12-Step communities, successful for 60+ years, are anchored in privacy and rely on members to sustain anonymity.

    d) Accounting for how identity is shaped, sustained, and transformed by social interactions over time AND, in return, will shape, sustain, and transform community. For example, what happens to/within a patient community if/when someone is completely cured? (Note: I’m not using the word “healed.”)

    3) Tactics and tools for engaging participants in communities also need to be anchored in all the above.

    There’s more, of course. When is there not? As you can probably tell, I love this conversation!!

    Note to Dave: I throw in hifalutin’ carp like the “hermeneutic of suspicion” for fun. Now *that’s* a disease!

  16. ePatientDave says:

    @MeredithGould notes "hermeneutic of suspicion"; I envision ppl turning into lizards as they get angry http://is.gd/8e9bM

  17. Shwen Gwee says:

    RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #SocPharm #FDAsm

  18. Brian Ahier says:

    Patients & online communities: is social sharing the future of healthcare? http://bit.ly/aolNPF #hcsm #WhyPM (via @SusannahFox)

  19. RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #hcsmeu #hcsm #WhyPM

  20. What else should we talk about?

    My clear preference would be to start the conversation all of us must have for the next few years. For the longest time medicine has been as much an art as a science. It should come as no surprise that the same applies to medically oriented social networks. We have now, after the first 5,000 days of the public Internet 2 main models for these social networks. The older one is what made the amazing ACOR possible. There the patient narrative is king. It’s the information passed from one patient to another that makes it possible to save lives. The newer one is data centric, represented by the no less amazing PatientsLikeMe venture. There the patient reporting into structured data silos is king. Hopefully it is the new knowledge that can be derived from the common data sets that will save lives.

    Until now nobody has really build a successful system designed to benefit from the strengths and weaknesses of both models. As Health 2.0 becomes an old term and as we slowly inch up to the next generation of Internet based health services, I believe that having a conversation about the strengths and weaknesses of each model would be fascinating.

    • Susannah Fox says:

      Gilles, I love this idea.

      The danger of a big panel (up to 7 now on this one) is that each person gets 5 minutes to pitch their concept or company and we don’t get to talk about issues, like the ones you describe, in depth.

      Here’s an idea: let’s get all that introductory stuff out of the way before an event begins. Everyone who attends should have a clear idea about who’s going to be up on stage. We each get 3 words to describe ourselves and off we go.

  21. RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #hcsmeu #hcsm #WhyPM

  22. @susannahfox @ePatientDave my response to openness can heal! http://tinyurl.com/ybqc8q5

  23. amnews says:

    RT @ahier: Patients & online communities: is social sharing the future of healthcare? http://bit.ly/aolNPF #hcsm #WhyPM (via @SusannahFox)

  24. Carrie Brown says:

    Privacy can kill, openness can heal. Is social sharing in online communities future of health care? by @SusannahFox http://bit.ly/a24SKL

  25. Tom Stitt says:

    Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #SocPharm (via @SusannahFox @shwen)

  26. ePatientDave says:

    Great @MeredithGould comment on the "Openness Can Heal" post – delayed by spam filter, waaa http://is.gd/8gsTJ

  27. amnews says:

    RT @Doctor_V

    Interesting RT @SusannahFox: Patients & online communities: is social sharing future of health care? http://bit.ly/aolNPF

  28. RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF #hcsmeu #hcsm #WhyPM

  29. Interesting RT @SusannahFox: Patients & online communities: is social sharing the future of health care? http://bit.ly/aolNPF

  30. via @KentBottles @SusannahFox Patients & online communities-is social sharing future of health care? http://bit.ly/aolNPF #hcsm (might be)

  31. RT @SusannahFox: Clinical trials, IRBs, and HIPAA: a thorny comment on e-patients.net: http://bit.ly/cbGp93 #WhyPM

  32. DarthMed says:

    There is no rocket science here, folks.

    Its about perceived risk versus benefit – thats all.

    e.g. For people that feel socially disconnected because of their disease, the benefit of joining a social network may outweigh their concerns about privacy. Since most users of health based social networks don’t get much pay-off (see contrast with FB below), the benefit of ongoing participation doesn’t materialize to justify the effort and risks, and these patients become inactive.

    e.g. Since most people don’t plan to be hit by a bus tomorrow, the perceived benefit of having all their data in one place doesn’t outweigh the perceived risks of giving their health data to Microsoft or Google. So its no surprise that those services are not really breaking land speed records.

    and some examples that reinforce this point in reverse:

    e.g. Folks that join facebook, get the benefit of watching a soap opera that is the aging of their high school friends. The benefit grows over time, which lead users to start posting more photos, personal information, thoughts despite privacy concerns. Compare the crescendo of engagement that FB users seem to display compared to the drop in participation that occurs on PLM – which actually does a better job than FB at allowing people to remain deidentified.

    e.g. Those who just received a cancer diagnosis and dont know where to turn will check out ACOR, register – and, for them, the benefit of getting a quick pointer of information will outweigh the risk of handing over their email address. (Gilles, I’ll even give ACOR a plug despite your desire to take away my privacy :-) )

    Thats all there is to it. Sometimes I think we try to overcomplicate these issues – wanting to blame “the system” or “the culture” for failings in our own services.

    Offer benefit, people will come. Offer nothing, people won’t.

  33. DarthMed says:

    Susannah – thank you for inviting some additional questions for the panel. How about….

    1. Patient communities and profitability… What does the money really look like? If the business is simply a profiled patient panel, how can/will a group of 8,000 patients compare against market research panels that exceed 10-20x those sizes? Would patients be willing to pay? What implications will this (lack of) business model have for the further investment in / development of patient communities.

    2. Where do all the patients go….? 51% of people use the internet for health … but only 60,000 people registered for CureTogether (since 2008) + PatientsLikeMe (since 2004) … and only a small fraction of those registrants are active. How many more years do we need to wait before we see this wave of ‘active online engagement’ materializing? In the end, if the business model (see (1) above) needs to shift to premium services, how many of today’s users would actually pay?

    3. Show us some data…! These conferences have become very good at showcasing new ‘online communities’ instead of encouraging presentation of data that can help quantify / evaluate the healthcare benefits of patient communities.

    …just some ideas to stir the pot ;-)

  34. SusannahFox says:

    @berlin_health20 @health20paris @boltyboy We got an early start on the patients & online communities panel: join us! http://bit.ly/aolNPF

  35. SusannahFox says:

    Clinical trials, IRBs, and HIPAA: a thorny comment on e-patients.net: http://bit.ly/cbGp93 #WhyPM

  36. Hi Susannah. Looking forward to seeing you soon. This multi-country crowd wants to hear about the issues such as privacy and business models yes but especially about potential differences among countries.
    What discoveries if any about consumer behavior in communities or in regard to communities have been made uniquely in Italy, Germany, UK, US, the countries on your panel (+ a question from the floor on France). People think that “their” country or region is different. I believe that the fundamentals are the same in Europe and North America; only the size of the consumer segments may vary, for example, on willingness to share, desire to be pro-active.

    • Susannah Fox says:

      Thanks, Denise!

      I hope we can explore topics beyond the cultural, but I was intrigued by a comment left on Jarvis’s blog by a German (scroll to what is currently the last comment on the Privacy Paradox essay):

      “We lack a culture of sharing our knowledge.”

      Is that really true? And if so, what form does patient engagement take if there is not a strong ethic of pooling knowledge?

  37. Chris Hogg says:

    @SusannahFox Really good comment thread on your post. Interesting discussion and seems lots to talk about in Paris. http://bit.ly/d04odn

  38. Deborah Bell says:

    Privacy is still a very thorny issue. I want my medical information available to me, but not to be used against me.

    My cancer diagnosis has become public information over the years, because of my activism. I haven’t been in a situation where it would threaten my employment. But – it could have. I was very aware of that, and stayed employed at large companies, which were less likely to use it against me.

    I realize that is against the law, but it does happen. That is the reason, also, why many people use aliases on ACOR and other social networks, and why ACOR is not searchable by Google (at least, not now). I just googled myself and no ACOR link came up, at all (after 80+ pages).

    I think the key issue is how to make health information easily available to the people who really need it, without violating their right to privacy.

  39. ines hernando says:

    It might be interesting to hear the panel’s views on how different health systems might influence consumer attitudes towards patients communities.

    In European Health systems access to your GP or primary care doctor is a relatively easy one, and there is where most people get information about healthy habits, public health campaigns, etc.

    Does this mean that in the Pre-diagnosis phase Jen refers they might have less incentives to participate in online communities ?.

  40. It might also be interesting to look into differences about how people in Europe define health and how it relates to medicine and culture.

    Hearing a French cardiologist telling an 80 year-old person “Please do not stop smoking! I want you to limit the number of cigarettes you smoke daily but stopping completely could have more detrimental effects than the expected benefits” reminded me that many people in Europe really look at life in different ways as Americans do. This in turn, has a strong impact about they look at medical issues as diverse as what procedures to reimburse, what’s the significance of activated patients or how to deal with end of life.

  41. SusannahFox says:

    Germans lack a culture of knowledge-sharing? A French cardiologist is OK w/cigarettes? Read on: http://bit.ly/bz69DN

  42. ePatientDave says:

    Very interesting @GFry comment on @SusannahFox "Privacy can kill" post – EU's different view of life thus health http://is.gd/8LYIc

  43. SusannahFox says:

    @Berci Sharing stories vs. data, also see: http://bit.ly/aolNPF (it's what @gfry & I hope our #health2eu panel on communities will address)

  44. SusannahFox says:

    Conversation around #health2eu panel on patient networks started back in Feb: http://bit.ly/aolNPF

  45. Andrew Spong says:

    RT @SusannahFox: Conversation around #health2eu panel on patient networks started back in Feb: http://bit.ly/aolNPF

  46. [...] 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, [...]

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