Does Health 2.0 = Patient-Centered Service?

Peter JonesDesign for Care

The 2.0 technology trends of new media, enhanced web applications, data-driven apps, and social media have advanced the sophistication and interaction of applications in most consumer domains.  And co-occurring with this trend, the last three years have been filled with pronouncements of revolutionary changes in healthcare and personal health management envisioned by democratizing health information and enabling communications among people with very specific shared health concerns. Both technology innovations and consumer healthcare resources are included in the Health 2.0 arena.

An exemplary Health 2.0 trend is that of health seeking communities. Several early and progressive health community sites have taken hold (Patients Like Me, CureTogether) with adoption from people in various health “communities of concern.” There are numerous specialized disease and patient community sites in every niche and using every wiki and social service. While these are not intended to replace patient communication with health professionals, they serve complementary purposes, enabling conversations between people with similar concerns and questions.  I don’t think we can say how these developments will impact healthcare practice innovation in 3-5 years, because but for now they are leading community resources for those with diagnosed and chronic and complex syndromes requiring creative and consistent self-care.

I start with a clear example since it appears that the conceptual models surrounding Health 2.0 share less agreement with each other than the Web 2.0. models (which were largely originated by Tim O’Reilly and developed from there.)  And this should be seen as a healthy trend – early agreement around the meaning of innovation tends to limit its emergence and novelty. If current business and policy stakeholders take ownership of emerging concepts before the ideas have had a chance to organically develop at the level of user innovation, the future concept becomes colonized by those preserving their stake in the present.

How far do we really expect the web to take us?  Health is not an information problem, certainly not solely, but a personal and social agreement acted on by commitments to future health. A systemic health revolution is not a function of better web applications, but of policy and practice changes. Information follows, it does not lead, these changes. Take a close look at the mess of large-scale electronic health records (EHR) systems if you need a reminder that information does not lead.

Susannah Fox, with the Pew Internet Project, posted a brief  piece on Kevin MD titled “Will patients embrace Health 2.0?” She opens with a physician’s quote (below) that rings true, even if frustrating to those of us working on the next revolution. She reflects on responses from physicians that remind us that complex social systems are thick networks that require engagement on the ground, and that change may look more like community organizing than website design.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

You may start to rethink digital and product strategies that require health-seekers to make commitments based upon remote participation. Health and care are localized and personal. As Nicholas Christakis and Fowler recently illustrated (with analysis from the longitudinal Framingham Study) individuals create and sustain healthy and unhealthy networks. What you do locally makes a difference to everyone  in your network. And these networks also take on a life of their own, as the field of public health reminds us that health and disease are both individual and distributed social phenomena. Connectedness appears centrally in the emergence and design of Health 2.0 resources.

Several models of Health 2.0 have been promoted, which present a wide range of opportunities for change and interaction. Dr. Scott Shreve created the compelling Virtuous Cycle model, illustrating factors for practice and policy innovation:

Notice that the patient is not fixated in the center of the model, and yet the patient-centered view is a significant trend in Health 2.0 overall. First of all, there are several different models and visions of Health 2.0, nicely listed and defined in Wikipedia.

What I find interesting about this model is how it shows the opportunities for change as independent of technology. There may be actual systemic leverage points in the model. Leverage points are the concept that an intervention can be planned and timed to have an accelerating effect on feedback to enhance a system of activity. In this model, many of the right features are identified: Incentives, Pricing, Service change, Practice change, and to some extent information. But the model presents a landscape of values more than it does technology. While these values are clearly drivers for change, they are not necessarily patient-centric.  A systemic view of health leads to many other factors than the individual, whose immediate health may be of concern.  I also think it oversimplifies the complexity of systemic healthcare to focus radically on the patient. Being a patient is a “state: that individuals pass through, it is not a personal identity (well, for most of us its not).

The value that I see in Shreve’s model is that of a systems cycle centered around a health condition, a cycle that prompts individual health-seeking and care, the intersection of which being the state where the “patient experience” shows up. Here we see, as Toronto’s collaborative informatics researcher Peter Pennefather says, “the disease is centre stage.” The emergence of illness creates the conditions for things to happen in care and practice.

So then I might not refer to this model Health 2.0, because it risks confusing the systemic innovation suggested in the model with the technology innovation universally implied by the 2.0 appellation. I see it as a systemic health innovation model, that integrates Health 2.0 technologies. That may be a limiting view – I’d like to know what you think … Apparently, according to Wikipedia, the possibilities for Health 2.0 are “unlimited.” That’s fine, but innovation requires that we reason about the systematic impacts of an intervention. We need to start somewhere, a point of leverage, that we think will make a difference.

Health 2.0 has a significant impact in changing practice, and these informed voices are critical accounts influencing the future field. The scope of concerns any doctor faces in practice, business, and patient decisionmaking is beyond the complexity those in other professions face.  Engineers, architects, even lawyers have tools and processes that help them limit the scope and range of concerns in their practices. But physicians deal with both individual patient health problems, teaching or (if private) running a small business, and ever changing regulatory complexity. So when a new wave of technology change occurs in medicine, it should not be a surprise that they display a fairly conservative adoption cycle mediating their acceptance and utilization of new media and information resources. Therefore, there may be many flavors of Health 2.0 – and it may do a disservice to innovation to aggregate them into a category based on information technology, one that may not hold together well when developing the different vectors of healthcare design and innovation.

(Finally, a plug for Kevin MD’s blog – it presents a fantastic wealth of connections and ideas for the plugged-in physician and health researcher. I find it one of the best sources of links and linkages for scanning the horizon of emerging issues in the world of professional practice.)