Health promotion: persons with developmental disabilities partner with the academy This study explores an innovative method to increase understanding of health care research and to develop strategies for promoting collaboration between scientists and the community to improve the health of persons with intellectual/developmental disabilities. The content area that scaffolds the project is promotion of wellness and prevention of secondary disabilities, in concert with the U.S. Surgeon General's 2005 """"""""Call to Action to Improve the Health and Wellness of Persons with Disabilities"""""""" and NIH's """"""""Future Paradigm"""""""" for Medicine. One of the four goals of the former is that """"""""persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles;"""""""" the latter says that medical research will be predictive, personalized, pre-emptive and - key for this application - participatory. Thus we will address directly the practical questions surrounding the development of true partnerships between the research community and the public with intellectual/developmental disabilities for health promotion research. The proposed partnership is between the Institute on Disabilities at Temple University, Pennsylvania's University Center for Excellence in Developmental Disabilities, and United Cerebral Palsy of Central Pennsylvania, with the national UCP office in support. Temple and UCP Central PA have built a productive, supportive relationship during the past 15 months, but it has become obvious that the two are culturally disparate in ways important to resolve if future efforts are to succeed. The """"""""Partners in Research"""""""" program offers a unique opportunity to enhance mutual understanding of cultural issues, find ways to resolve them, and rigorously evaluate the effort so that it can be compared with others with the same goal but different methods. Thus the PIs propose a series of small-group structured discussions, with a protocol of topics to be developed in advance, using a collaborative framework over a 2-year period. During the first year, a team from Temple will meet monthly a team from UCP-Central PA, including members of the community who have intellectual/developmental disabilities. During the second year, the partnership will collaborate in developing a protocol on a brand new project on health promotion in a community setting for persons with intellectual/developmental disabilities. A structured evaluation of the project will ask participants each month to answer qualitative questions about what was successful and not successful about the meeting. Outcomes will include a manual on this method of promoting involvement in the community of persons with intellectual/developmental disabilities;a """"""""ready to go"""""""" research application on improving wellness that exemplifies community based participatory research, and an in-depth evaluation of the effort. Relevance. This research project will directly address the practical questions surrounding the development of true partnerships between the research community and the public with intellectual/developmental disabilities. As a case study of collaboration between an academic institution of excellence and a highly respected community organization for the purpose of fostering health promotion and wellness, the evaluation of the barriers to and facilitators of success of the intervention has immediate and far-reaching implications for the field of health care for those with disabilities.
