Nothing Done To Us or For Us Without Us
For the second time in less than a year, the Romney Administration is embarking on an initiative to draw consumers into health quality and cost issues -- and leaving consumers out of the process.
Background: the National Governors Association recently invited Governors to apply to send teams to a "policy academy" to develop state plans to improve health care quality. The Massachusetts proposal includes about two dozen references to their intention to engage consumers, and lists a team of eight public and private officials that includes, you guessed it, no consumer.
Several weeks ago, the team spent a week at the posh Claremont Resort in Berkeley CA with nine other state teams. Reportedly, a major topic among everyone was: how to engage consumers. Among the ten teams, not one consumer.
The Mass. health reform law establishes a "quality and cost council" to develop state plans to improve quality and control costs (by the way, establishment of the Q&C council was first advanced by HCFA and Affordable Care Today in health reform legislation filed in December 2004). The Romney Administration now intends to use the NGA policy team to develop their plans, and use the Q&C Council for rubberstamping purposes only. (Consumers were left of the Q&C Council as well -- relegated to an advisory committee.)
This is not the first time we've seen this from the Romney Administration. Last October, they unveiled a quality and cost comparison website for consumers -- and never consulted with a single consumer about it, before or after launching, in spite of written requests to do so.
Fortunately, private groups populating the Massachusetts quality landscape have a different attitude. MA Health Quality Partners, the MA Health Date Consortium, the MA Coalition for the Prevention of Medical Errors, MassPRO, the MA e-Health Collaborative, among others, all include consumers on their boards and in their work.
Dr. Don Berwick and the Institute for Healthcare Improvement have a mantra describing their attitude about patient/consumer involvement: Nothing done to us or for us without us.
Words the Romney Administration might take to heart.