Amid more data released that consumers are not using personal health records (PHRs) or don’t even know what they are, the state of West Virginia has launched a Web site designed to convince consumers of the merits of health information technology (HIT).
As best I can tell from eHealthWV Web site, here’s the plan: “To ensure consumer input and involvement in the process of health information exchange and electronic health records, WVMI and its partners launched a new phase to the project in mid 2007. It involves educating consumers about electronic health records and health information exchange.”I’m sure they mean well, but it would be helpful if one of these state efforts “ensured consumer input and involvement” by actually soliciting their input before designing their outreach. Right now, most states and health information exchange activities are focused on addressing consumers’ fears about data rather than their needs about health care.
Given survey data that highlights consumer concerns about privacy and security, it’s reasonable to ask: Why are consumers so focused on these issues with respect to health information exchange? It’s probably, in part, because consumers don’t care about data. How many consumers do you know who are passionate about data?
In contrast, consumers do care about their health and resources that help them manage it. But most consumers have not experienced an electronic tool that facilitates the flow of appropriate information to them in a timely way. Education can be bidirectional (or multidirectional or collaborative).
Rather than framing the question as “how do we get consumers to understand why this is important to them?” We could start outreach and engagement by better understanding consumers’ needs with respect to managing their health. By taking a more proactive, user-centered design approach, such as used by the health system PeaceHealth in the Pacific Northwest, they could design tools and health information exchange plans that meet consumers’ needs rather than try to convince consumers about what they should care about with respect to management of their health.
After asking consumers what health tasks they wanted to accomplish, developers created electronic shared care plans and other tools that met those specific needs.As I have blogged about before (and is described in an excellent New York Times Magazine article from 2007) this is the approach that pioneering companies like Toyota have taken to understand consumer needs. This is where the intersection of patient-centered care and HIT has so much promise. But we can’t get there unless we start by observing and talking to the consumers themselves.
Joshua Seidman is the president of of the Center for Information Therapy
that aims to provide the timely prescription and availability of
evidence-based health information to meet individuals’ specific needs
and support sound decision making.