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Letter to the Editor: Professionals with Personal Experience in Chronic Care (PPECC)

Minnesota Chair in Long-Term Care and Aging

To the Editor:

The contemporary medical care system is tragically incompatible with the needs of the predominant nature of disease problems today. While many people have identified the need to change the current medical care system, to align it better with the realities of chronic disease, change has been painfully slow. At least part of this lack of enthusiasm can be attributed to the absence of any strong consumer advocacy demanding such changes. Neither disease-specific associations nor those representing older persons have seized chronic care or long-term care as the banner around which to rally to demand better care.

Ironically, many professionals involved in aging and chronic care have encountered the very problems that need changing in their own personal lives. Whether coping with their own chronic illnesses or those of families members, these health professional consumers have had to experience the very insults of contemporary care that form the agenda for reform. Perhaps the nexus of a consumer response might best be nurtured by establishing a coalition of such professional consumers. Such a group need not, and should not, act alone. Ideally they would bring with them the thus-far-reluctant organizations that should be vocal in calling for change. But these professional consumers would provide an unusual and noteworthy basis for instigating the much-needed changes. Their personal testimonies could speak volumes about what needs to be revised. Their credibility would add weight to the recommendations.

Based on a number of random conversations, it seems that a substantial proportion of persons working in the fields associated with chronic disease and long-term care have had such personal experiences. Whenever I describe my own painful experiences in getting the long-term care system to work effectively for my mother's care, people nod immediately and offer up their own war stories. This experience has been repeated often enough to make me believe it is common. The challenge is to identify them.

I propose the establishment of a nonprofit organization composed of just such persons. The purpose of this group would be to share experiences, to use these experiences to formulate policy proposals for improving the delivery of chronic illness care, and work toward developing a better system of chronic care in this country. These efforts could include lobbying, but they would hopefully draw on the unique credentials of the group as both care recipients (perhaps indirectly) and subject experts. Membership would be open to anyone who works in the general area and has a story to tell or a personal experience to share.

I invite anyone reading this who is interested in helping to establish such a group to contact me at kanex001{at}umn.edu or c/o University of Minnesota School of Public Health, MMC 197, 420 Delaware St. SE, Minneapolis, MN 55455.

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