There’s a really interesting thread at e-patients.net about the use of participatory medicine. There are some really good comments from patients and professionals alike about what lessons can be learned from participatory medicine experiences.

It reminds me of what I wrote about here a couple weeks back about my experience with my son’s asthma attack. Going through the experiences ourselves is definitely the best way to learn about it–even though we would never wish it on ourselves or anybody else.

It also reminds me about the challenges of communicating what we mean by “participatory medicine”–or for that matter “information therapy” (Ix) or “shared decision making” (SDM). That was the subject of the most recent IxCenter white paper, which attempted to bring some ideas to that conversation. Getting over the semantics and communicating about better communication is something we still need to figure out better.

Lots of innovative ideas for how to advance participatory medicine will be shared at our 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.” Among other things, I’m particularly looking forward to hearing from some “real patients” who will be there to share their stories.

The cost, access, and quality crisis that is American health care has many people searching for silver bullets. We have heard (to address two examples) about how ubiquitous, interconnected electronic health records (EHRs) will create great efficiencies in care delivery and how reimbursement reform–such as the patient-centered medical home (PCMH) model–will rejuvenate our struggling primary care system.

It’s not that there’s no truth to these arguments but rather that they need to be more specific. As Steve Downs wrote on RWJF’s Pioneer Blog a month ago, Gordon Moore points out in an RWJF-funded white paper that much of the EHR advancement has missed the point or failed to maximize HIT’s potential. Moore is right that the focus of EHR systems should be more about clinician workflow and creating better continuity of care as care delivery passes through a series of steps. I would add that greater focus on creating connections for the patient/consumer is just as important.

There’s no doubt that advocates of the PCMH model are correct that we need to place greater emphasis on both primary care and a more holistic approach to care management. To promote effective ongoing care management, reimbursement needs to encourage more than just trips to the doctor’s office. But for it to work, PCMH must be truly patient-centered and the existing official principles are somewhat vague as to how to meet patients’ needs.

The 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care” will explore both of these topics in great detail: How can we ensure that we maximize the potential of these important developments? What are the keys to addressing consumers’ real needs? How can they help to reform a broken health care delivery system?

Join us to help answer these questions on June 12-13 at the Newseum in Washington, DC.

As I said in my post about my 4-year-old’s middle-of-the-night strained breathing a couple weeks ago, it’s true that we’re all patients and caregivers. Those scary (and mundane) encounters with the health care delivery system are critically important for keeping me grounded as to why I do what I do everyday.

It’s also important to observe and listen to patients tell their own stories. That was one of the critical tenets of the Patient-Centered HIT Initiative. It’s also important for consumers to help define what the future of health care looks like, which is part of what’s happening over at the e-patients.net blog, where professionals and lay people are working on refining the Health 2.0 definition.

We always like to include consumer perspectives at our conference, and we anticipate at least two presentations from the patient’s perspective at our 7th Annual Ix Conference, WIxRED: Next-Generation Patient-Centered Care. One will be a a Boeing employee with a chronic condition who will present with Kerry Meyer, PhD, ARNP, RN (Care Manager, Valley Medical Center), about the role Ix plays in a practice where a truly patient-centered medical home project has been implemented.

The other patient perspective will come from David Bradley, Chairman of the Atlantic Monthly:

Twenty years running a health care research company didn’t prepare him for the challenges of dealing with acute health issues. The founder of The Advisory Board Company shares what he learned from an anxious search for just the right health care information and the insights it gave him into the direction of the Ix movement.

David has a powerful story to tell. I hope you’ll join us at the Newseum to hear it.

I was speaking yesterday at the World Congress Leadership Summit on Consumer Connectivity & Web Empowerment. Another speaker, the always informative and engaging Susannah Fox, Associate Director of the Pew Internet & American Life Project, shared several interesting pieces of data.

What resonated most with me (but certainly didn’t surprise me based on past data I’ve seen from other sources) was that–despite consumers’ embracing of the Internet for health information searching–they still want to get information from their clinicians. Pew survey data revealed that, for 80% of consumers, their first choice of where they’d like to get information is from a health care professional.

Why? I believe that consumers are hungry for information related to their specific health care concerns but the Web, by itself, can’t give them everything they’re looking for. Specifically, they need guidance or navigation–what information can they trust and which content is right for them.

Just as importantly, they don’t want to have parallel tracks of information gathering–one online and the other when they go into the doctor’s office. They know how important information (and the management, understanding and using of that information) is to their health, and they want it it well integrated into the other aspects of their care.

This is the crux of information therapy (Ix). The vision for what this should look like and the “how you do it” are the central goals of our June 12-13 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.” If you’re interested in this subject, there is no better place to learn, explore, and engage with like-minded people coming from a wide array of perspectives (register here). You can find all the specifics on each session by clicking on the conference agenda.

I know that some people have been put off by the term “information therapy” and–to a lesser extent–our shorthand for it, “Ix.” An article from HealthDay and on MedicineNet.com, “The ‘Net: A Tangled Web of Health Information,” brought up some recurring themes that go to our rationale for the terminology.

Just like medications or other treatments, information can be powerful medicine–if used correctly. The premise of the HealthDay article is that the “dizzying amount of information” on the Web can cause “overload–or worse,” if you make use of bad information.

Actually, this is no different than proven medications–there are many corollaries between medications and information, which is why talk about “Ix” similarly to how “Rx” is commonly used. Just because aspirin might reduce pain, swelling and prevent heart attacks, doesn’t mean that consumers should take a whole bottle of them.

That information overload described in the article mentioned above can also be thought of as an “overdose.” Similarly, getting the wrong or inaccurate information can lead to negative “side effects.” In fact, we need to figure out the appropriate dose, frequency and duration of the information that individuals need to make better health decisions and lead healthier lives.

That is not at all to say that information should be available “by prescription only.” On the contrary, our formal definition includes the “prescription and availability,” specifically to make room “over-the-counter” access to the right health information.

The question is: How do you actually make that happen? That’s the mission of the Center for Information Therapy and will be the topic of our 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.” I hope you’ll join us on June 12-13 to explore these strategies–and, if you register by tomorrow, you can still get $200 of the regular registration fee.