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.

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?

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 ?.

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.

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 ;-)

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.

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