I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!

Thank you to everyone who posted a comment, emailed me, or tweeted a suggestion in response to my request for input last July: Crowdsourcing a Survey. Six new topics came directly from those conversations. Thank you to Veenu Aulakh and the California HealthCare Foundation who provided funding for the survey. Thank you to Lee Rainie, Kristen Purcell, and Kathryn Zickuhr, my colleagues at the Pew Internet Project who helped mine and polish up the data for the final report: Health Topics.

Here is what we found: There is a health information divide. Pregnancy and childbirth seem to cut across it. Mobile may change it in the future. But for now, significant portions of the adult population do not have access to up-to-date information on drug recalls, food safety, or treatment options.The most likely groups to look online for health information include:

• Adults who, in the past 12 months, have provided unpaid care to a parent, child, friend, or other loved one
• Women
• Whites
• Adults between the ages of 18-49
• Adults with at least some college education
• Adults living in higher-income households

By contrast, fewer than half of adults in the following groups in the U.S. look online for health information:

• African Americans
• Latinos
• Adults living with a disability
• Adults age 65 and older
• Adults with a high school education or less
• Adults living in low-income households ($30,000 or less annual income)

Only 29% of adults age 65+ look online for health information (mostly because only 40% have access to the internet), compared with 58% of 50-64 year-olds, 66% of 30-49 year-olds, and 71% of 18-29 year-olds who look online for health information. Yes, the internet is an amazing resource, but for whom?  And whose voices are we not hearing from online?  The wisdom of our elders is not well represented.

Caregivers are a potential bridge to older adults: fully 70% gather health information online. And young people, Latinos, and African Americans are increasingly likely to use mobile devices to gather information, which could potentially shift the patterns among those groups when it comes to using health information resources.

Some health topics provide other clues about the road ahead.

Amy Romano was an eloquent and persuasive advocate for including a question about pregnancy and childbirth. One in five internet users has looked online for this type of information, but of course it is even more popular among younger adults and among women, and it cuts across all education levels.

Read what Amy has written about this opportunity:

What if we could help a large population of highly motivated, influential health care consumers become empowered, engaged, equipped, and enabled? And what if they could develop these skills while they were healthy – before they face life threatening illnesses or need to manage chronic conditions? What if transforming the way these consumers participated in their care could reduce the burden of one of the most costly conditions in our health care system and improve the health of millions of people each year?

It’s all possible – if we make maternity care more participatory.

Again, thank you to everyone who contributed ideas. I am a better researcher because of my participation in these conversations. Please dig into the report and let me know what you think. I welcome your comments.

And yet changing culture amongst physicians remains challenging, for a variety of reasons (some good, some not so good).  For example, it takes an average of 17 years until physicians adopt proven best practices.  Hopefully, Participatory Medicine won’t take so long.

Yet, there are many of my colleagues who are already adherents to the model of Participatory Medicine, although they may not call it that. These physicians work hard to engage patients in their healthcare, understanding that healthcare is not a spectator sport.  They have a mutually respectful relationship with their patients, encourage them to search for online health information, point them to online support communities, communicate with them online, and invite patients to view their records both when in the office and at home.

Why practice Participatory Medicine?  Everyone has their own motivations.  Some of our stories (including mine) are here.

Do you support these ideals?  Are you practicing Participatory Medicine?  If you are, let us hear your voice! Join the SPM, submit your studies to the Journal, submit blog entries to e-Patients.net, spread the word, teach your patients, and teach your colleagues.  Like any movement, this won’t happen without your active involvement.

Asked my opinion about how healthcare will evolve over the next, say, five years, I mostly answer that I pronounce the year 2.010 as “two-point-o-ten”.

In my honest opinion healthcare will start to migrate towards a more patient-centered model, and I think in a 2.0 way. I have tried to catch my thoughts in a little video below. It is the rough sketch of a posting I’m working on that is the follow up on my 15,000th tweet post.

The demographics are changing, as I also mentioned in my October video of healthcare in the Netherlands: [You can skip this if you remember it, but it's worth a review -Dave]

The way patients act will change with the demographics. They will expect healthcare to be 24/7, they expect it to be on- & offline just like the internet: anytime, anywhere and most of all full of choices & options, from which patients and their caregivers will choose.

I think there will be evidence about the way youth is concentrating, I can see it in our own kids, they get more and more impulses, in a short period of time, make faster choices out of more options at a glance, and what’s most important: they will choose

Up until now (at least in the Netherlands) healthcare hasn’t really become a market. Sure there is some freedom of choice, but all institutions offer more or less the same. And in the rare occasion where a HC institution has something really special, they almost never talk about it other than in conferences, scientific literature, so … that’s still different from the way the “new” population of patients works its way though the bulk of information.

One way or another, once providers start talking about their different offerings, the freedom of choice will let this new generation “vote with their feet.” Remarkable to add is the difference in gender within social networks, although there are some myths about how the generation which will follow will use media as some research shows.

This development will lead HC into a different model I think, as shown in the graph above. Of course, whether the year 2.014 will be the correct one, and if it will be a Evolution rather than a Revolution is to be seen. The way HC will be REshaped from patients’ perspective will be a good “side effect.”

Here are some highlights of CPeH’s view. Meaningful use is when:

• Care is comprehensive, coordinated, personalized and planned
• Patients and their caregivers are full partners in their care, assisted with management of chronic illnesses and health care decision making
• Transitions between settings of care are smooth, safe, effective and efficient
• Patients can get care when and where they need it
• Patients’ experience of care is routinely assessed and improved
• Care is connected to and integrates community resources
• Continuous quality improvement and the elimination of disparities are a top priority

Don’t you love it? Wouldn’t you love to have that be LAW??

If you’re into this stuff, please read the rest of Josh’s post. More important info on CPeH and on Markle. Good contribution.

Sadia Ismail and Graham Mulley paint quite a picture in their opening lines:

From 2 pm they gather at the entrance to the ward, occasionally drifting through the doors, only to be reminded by sister that “visiting starts at 2.30 pm.” Doctors cower in the office, completing paperwork and dreading that journey to the bedside for a drug card, fearing they may pay the price with a long tirade from a patient’s relative.

It reminded me of what Tom Ferguson wrote in Chapter 4 of “e-patients” (see p. 57, under “Forgotten Heroes”):

[Family caregivers] outnumber all other types of health care workers combined by a factor of four to one, yet they often feel like the odd person out when dealing with hospitals and medical professionals. In the world of Health e-Communities, they are first-class, not second-class, citizens and frequently serve as the group’s mainstays, organizers, and hosts.

Ismail and Mulley conclude their article with a call for flexibility and mutual understanding:

We believe that a shift in culture is needed to ensure the best practice on visiting policies. Any visiting restrictions should be based on mutual respect and consideration. Health professionals should consider the rights, worries, and needs of patients and their families, and visitors need to understand the roles and pressure on staff and the needs of patients other than their own relative. Perhaps patients’ control of their visiting hours in the form of a contract may help, and this merits formal study.

We talk quite a bit about how most health care happens outside a clinical setting, but I think this article brings up important questions about how expectations are also changing in hospitals.