The Importance of Community Partnered Participatory Research in Disease Management

No less than three editorials in the latest issue (July 15 2009; no link available yet) of JAMA warrant the attention of the disease management community. All are remarkable for the academic authors' astonishing blindness about the impact of population health programs in the Medicaid sector, but at least one of them has a good idea.

First, the good idea.

Kenneth Wells and Loretta Jones of UCLA and the Charles R Drew University of Medicine, respectively, give us a new acronmym: 'CPPR.' This stands for community-partnered participatory research. They point out that the 'R' ('research') word is an otherwise 'loaded' term for vulnerable underserved communities because it denotes manipulative exploitation and experimentation. The good news is that they believe research is more than possible in these settings if it is jointly and transparently developed, addresses one or more community needs and is tasked to seeking out new solutions. The key words are that the research needs to be conducted 'with' the community, not 'for' it and that there needs to be 'humility' tempered by being open to diverse perspectives, especially in the interpretation of the study results.

The Disease Management Care Blog thinks this is a great reminder that studies on the effectiveness of population-based programs in Medicaid (which is an important window into the underserved) as well as other vulnerable populations should include the input of not only the sponsors, statisticians, regulators, consultants, actuaries, researchers and line management, but the local community leaders, representatives and advocates. It's our job to seek out those centers and church offices staffed by savvy street-wise workers and preachers who can give invaluable input into the formulation of the research questions, the study design and the meaningfulness of the data. These JAMA authors remind us that its a good idea for academics and disease management organizations (DMOs) alike to routinely seek out this support when we conduct even quasi-experimental designs to determine what worked best and why.

Now for the blindness.

Dr. Wells' and Ms. Jones fail to recognize how prevalent disease management programs are in the populations that are ostensibly served by the nation's academic medical centers. Not only have they missed the many reports of successful Medicaid-DMO collaborations, but neglected to ask their own UCLA colleagues about a report on a successful Florida Medicaid disease management program. In fact, the number of population-based care management programs currently underway in many States is astonishing. These programs were instituted precisely to address many of the disparities still rampant in many underserved communities today. All are have been or are being evaluated for impact, and the authors failed to note the importance of their suggestions in making these evaluations more meaningful to the populations being served.

It doesn't stop there. In the same issue of JAMA there are two other editorials that commit the same sin of looking but not seeing. Janet Collins PhD and Jeffrey Koplan MD of the Centers for Disease Control and Emory University, respectively, say it's time to institute 'health impact assessments' (HIAs) for all policies, programs and projects involving not only health care but transportation, housing, employment and agriculture. After extolling several successful HIAs (for example, its input was instrumental in the passage of the San Francisco living wage ordinance), these research scientists fail to take the next step and recognize the potential contribution of disease management methodologies in assessing health outcomes and impact on costs.

Turn the page and you'll find Jonathan Fielding MD and Steven Teutsch of the LA County Department of Public Health and UCLA (Dr. Fielding) salute the a) US Preventive Service Task Force Guide to Clinical Preventive Services and b) the Community Preventive Services Task Force Guide to Community Preventive Services. Yet, while the recomendations in both these guides are evidence based, they note with some dismay that the track record for fulfilling them in the Medicaid populations is dismal. They advocate for more effective involvement of health systems, clinical practices, employers, payers, community based groups, government and public agencies. Any mention of how disease management programs have partnered with Medicaid agencies for years in addressing precisely these shortcomings? None. The additional support from DMOs in advancing quality in these populations went completely unmentioned

If the DMCB is going to assign blame, it probably belongs to the Editors of JAMA, who failed to recognize just how narrow minded these six authors were being. JAMA is an important journal and they owe it to their readers to help authors to encompass all the pertinent medical literature in their commentaries. Given the pressing nature of health reform and the role of population based care in addressing chronic illness in underserved and Medicaid populations, the Editors of JAMA let these authors - and their readers - down.

Maybe next time.

Good thing blogs are around to keep them 'Obamaesquely' honest.