Representing “Consumers” in Health Care
By Josh Seidman | Popularity: 25%There was a good post on the Health Affairs blog last month by Rob Cunningham titled, “Who Speaks for the Health Care Consumer?” It’s a great question and the post makes clear that it’s a complicated answer.
As Cunningham points out, many organizations use language to connote a focus on consumers/patients even when something besides some expressed consumer desire brought them to the solution they promote–for example, many (certainly note all) models for “consumer-directed health care,” the “patient-centered medical home,” and “personal health records” (just to name a few) were developed without any direct input from consumers themselves. Cunningham cites comments made by Ed Mendoza of the California Office of the Patient Advocate that consumer activism historically has often arisen as a negative reaction–such as to paternalistic models of care delivery.
It’s a great challenge to figure out the most effective and efficient way to integrate the true patient perspective, but some health care organizations have made great progress. One example presented to our IxAction Alliance in May was PeaceHealth’s approach to PHR development.
When PeaceHealth set out to develop a personal health record (or shared care plan), they took an entirely different method of development called “user-centered design.” Rather than creating fancy electronic tools and then getting input from consumers, PeaceHealth decided to start by sitting down with their patients first and directly asking them what tasks they wanted an electronic tool to accomplish. They hammered out all kinds of practical applications and specifications before writing a single line of code.
During the Patient-Centered HIT Initiative, when Ted Eytan and I went into practices, we actually spent time shadowing patients and clinicians, observing how they interacted, and what affected their communication. As I described in a post last year, this is an approach taken by some of the most successful companies on the planet (e.g., Toyota describes it as “genchi genbutsu)–go to your customers and watch them if you really want to know what they want.
It may not be practical to do this in every circumstance in health care, but it’s certainly a good goal to put out there. It’s probably the best way we can find out what consumers want without first making them furious by providing them with what they don’t.
RSS feed
November 4th, 2008 at 3:22 am
Sadly the shared care plan has failed to have a sustainable business model and the real value came not from the patient designed PHR but from having highly qualified nurse case managers in the program. Once the RWJ funding was gone so was the project and the technology is more then a little date now.
It was also used in a very small city with only one hospital and many local providers opted out of the system as they lost money by participating so it is a nice piece of the puzzle but far from a solution. The agency and people like Marc Pierson behind are known for playing politics at the State level and excluding consumers who have their own idea of how to solve the problem In fact earlier this year they crushed a true consumer generated solution that used web 2.0 concepts as it didn’t include the shared care plan software.
On the one hand, time and time again we see an odd belief that consumers will somehow have the time, knowledge and expertise to design a complex medical information system when experts have failed to do this. It is one thing to empower us but quite another to ask us to be the change agents to a very complex embedded system without using a systemic approach and it has an excessive over-reliance on the power of the market. Patients aren’t running around trying to find PHR’s they are trying to find doc’s that will take medicare, high quality providers and access to nurses, pharmacists and case managers to help them manage their care not a computer program. Would never expect them to design other consumers goods. Cars, TV’s banking systems.
The entire concept of a PHR is pre web 1.0 technology and fails to meet the needs of most consumers and fails to meet the needs of those with chronic conditions as well unless linked to both pay for performance changes and expert nurse case managers.