You MUST have patient voices at the table during the design stage if you want to end up with a patient centered healthcare system.

It has been two years since I sent this to the then head of ONC - David Blumenthall in response to a query - where in the HITECH ACT does it mention consumers and "we don't want any unfunded mandates" Although I was flabergasted I understood that they were implementing the ACT and didn't see the big picture yet.  Thankfully, now that we have new leadership at ONC with Farzad I think it is worth repeating. (and I might update it in a future post) since this is part of the core philosophy that drives my passion.

You MUST have patient voices at the table during the design stage if you want to end up with a patient centered healthcare system. Not just forums for patients to give talks AFTER the tools are in place or consumers helping to "sell" it but consumer centered designers who are skilled at co-designing the systems, tools, workflows to meet patients needs and then vetting it with actual patients. Not just one or two who are nationally recognized but at the local levels with real people

Ever since the Institute of Medicine’s 2001 report, Crossing the Quality Chasm: A New Health System for the 21st Century, we have been working towards a patient-centered care health care system that among other things: “establishes a partnership among practitioners, patients, and their families, to ensure, that patients have the information, communication, education and support they need to make decisions and participate in their own care."

The Institute of Healthcare Improvement also identified  the “critical importance of information sharing and decision-making” as one of the four core concepts of patient-centered care.“ You need to include “patients on health care improvement and design teams” so that they “have the tools and support they need” to be empowered, educated, informed consumers and “effectively participate in their care and decision making.”

There is strong support for this patient-centered model in Section 3001 of the HITECH portion of ARRA.  The National Coordinator is to develop a “nationwide health information technology infrastructure that allows for the electronic use and exchange of information that”-- ‘(2) improves health care quality, reduces medical errors, reduces health disparities, and advances the delivery of patient-centered medical care; ‘(5) ensures the inclusion of meaningful public input in such development of such infrastructure;‘(6) improves the coordination of care and information.

In an ideal “patient-centered system we would design our systems around patients and their care communities”; rather than around clinicians, doctor offices and centered on the needs of the system itself.

One health care system Group Health Cooperative has the highest EMR adoption rates in the US, (50% of 540,000) and they accomplished this by using a collaborative model of consumer engagement at each stage of design, implementation, adoption and optimization. Patients were able to “write” to their chart via email and this helped pull the providers forward through the adoption stage.

>The resulting “Shared Care” EHR model (vs a fragmented EMR/PHR) prioritized consumer needs (convenience, access to information).  In some family practices up to 50% of all encounters are now happening remotely via technology, with clear cost savings and improved patient satisfaction scores.

When patients are fully informed of their treatment options: 1)they generally select the least invasive or costly on; 2)  it improves  patient understanding of their health care options; 3) it reduce the rate of procedural interventions, and 4) it increases patient satisfaction with the care provided and confidence in the decisions they make." States Explore Shared Decision Making, Kuehn, JAMA.2009; 301: 2539-2541.

Consumers aren’t waiting for EMR’s or “Health IT. ” They are already using information technology to research health care concerns and find support  in increasing numbers. Pew Research  /California HealthCare Foundation In order to end up with a patient centered health care system you must engage all of the stakeholders  voices especially consumers  at each point in the process.

BACKGROUND; Many of you who know me realize that I helped stand up the National eHealth Collaborative a few years ago (before ARRA and HITECH) and the only two seats that are dedicated are reserved for consumers or consumer advocacy organizations. At the time Rob Koldner, a staunch patient centered design advocate was the head of ONC and we were on track to develop a consumer advocacy position in house but when he left so did the position and new leadership didn't see where in the funding legislation where it even mentioned consumers.. I was in fact asked where it did and the above is the one page response. Thankfully now that Farzad is running ONC we are seeing a shift back towards including the consumer voice but what we really need is a broader concept - consumer centered design.. Not only speakers but creators.