Multicultural Outreach and Healthy Aging: Models from the Parkinson’s Disease Community

1. Multicultural Outreach and Healthy Aging: Models from the Parkinson’s Disease Community Diane Breslow, MSW, LCSW Paula Wiener, MSW, LCSW December 10, 2009 Governor’s Conference on Aging

2. PROGRAM I: Community Partners for Parkinson Care (CPP) A Program of the National Parkinson Foundation, Inc.

3. Societal Mandates for Outreach • Everyone deserves equal access to equal healthcare. • The Social Work Profession • US Dept. of Health and Human Services • National Leadership on Minority Health • Institute of Medicine • National Parkinson Foundation

4. CPP Definition of Outreach • Planned, sustained efforts, • Combining expertise of professionals and grassroots volunteers, • To build relationships in the community • In order to facilitate access to education, support, and comprehensive care.

5. Three-fold Mission of CPP • To inform whole communities about Parkinson’s disease • To provide resources and support • To improve access to care for every person whose life is affected by Parkinson’s disease

6. Composition of Chicago CPP Outreach Coalition • Project Directors: National Parkinson Foundation • Coalition Coordinator: Center Coordinator • Medical Advisor: Center Medical Director • Community Liaisons: Agency leaders • Natural Helpers: Grassroots volunteers

7. Developing and Maintaining an Outreach Coalition • Learn about targeted communities • Develop relationships • Put together, and sustain, a coalition • Raise awareness of your coalition • Educate the general public • Educate healthcare practitioners • Create environments of support

8. Outreach Examples from Two “Natural Helpers” • In the Hispanic community • In the African American community

9. CPP Take-home Points • Learning about the communities we want to reach is the foundation of Outreach. • Relationship-building is a continuous part of Outreach. • Regular coalition meetings are essential. • Partnerships flourish when the involved parties see the partnership as mutually beneficial and the work integral to their organizations’ missions.

10. PROGRAM II: PDtrials A National Collaborative Program Led by the Parkinson’s Disease Foundation

11. Of key significance for the future of scientific innovation is the exclusion or under-representation of women, older people, minorities, disabled persons, and rural populations in the vast majority of the research studies conducted in the U.S. Major Deficiencies in the Design and Funding of Clinical Trials: A Report to the Nation Improving on How Human Studies are Conducted Findings of the Eliminating Disparities in Clinical Trials Project Chronic Disease Prevention and Control Research Center At Baylor College of Medicine

12. Examples of Impact • <1% of all Americans take part in research studies. • 60% of cancers occur in older people but only 25% of trial subjects were over 65 (2003). • At the close of the 90’s, 8 out of 10 medications pulled from the market posed a greater danger to women than to men. • CASS study of surgery vs. medical management of angina pectoris offered enrollment to 2,095 people, 30 of whom were minorities. If the study reflected the demographics of the disease, that number should have been 356.

13. Although older adults — especially those with co-morbid health conditions — are routinely excluded from clinical trials, it is this group that is the first and most numerous user of new medications.

14. Barriers to Clinical Trials Participation • Mistrust among patients – especially minorities – that they will receive the best treatment. • Chance of being in the “placebo” group and receiving no benefit from the treatment. • Lack of awareness about and willingness to refer to available trials on the part of doctors. • Strict inclusion and exclusion criteria on the part of study designers.

15. Overcoming Barriers to Clinical Trials Participation Both patients and their doctors need to understand: • The clinical research process • Risks and benefits • What trials are recruiting, where are they being conducted, and how to make contact

16. What One Health Charity isDoing to Address the Problem PDtrials A collaborative initiative of Parkinson’s organizations dedicated to increasing education and awareness about clinical trials

17. Foundational Components PDtrials.org website Monthly e-bulletin Twice-yearly print bulletin Educational materials Staff outreach worker Periodic Components Roundtables Clinical Research Learning Institute PDtrials Education and Awareness

18. PDtrials/Parkinson’s Disease Foundation Clinical Research Learning Institute Based on Project LEAD developed by the National Breast Cancer Coalition, the CRLI is a multi-day training by faculty drawn from all sectors of the clinical research enterprise. It empowers people with Parkinson’s disease to: • Educate the PD community about clinical research • Serve on Institutional Review Boards and Data Monitoring Safety Boards • Provide input on trial design, implementation, and evaluation

19. Without Adequate Participation and Representation in Clinical Trials We Cannot • Find a cure for Parkinson’s disease • Bring new and more effective treatments to market • Learn about potential differences among groups (e.g. the elderly, women, minorities) • Ensure generalization of results across various patient groups

20. CHALLENGES AND LESSONS I. CPP II. PDtrials

21. I. CPP Program Challenges Outreach is not always welcome by all communities. Outreach commands more time, and expertise, than some agencies have. How much PD education can we adequately convey in only one opportunity?

22. CPP Program Lessons Learned Outreach coalitions should meet face-to-face. Partnerships have to “fit” what both partners deem meaningful and important. How do we evaluate outreach objectives, methods, outcomes?

23. Finding time and cost effective ways to engage doctors and patients Measuring program efficacy Educating program leadership and coalition partners in outreach methods Adapting to the degenerating health conditions of trained patient volunteers II. PDtrials Program Challenges

24. PDtrials Lessons Learned • The “3 times” rule • Need to build personal relationships at the local, regional, and national levels • Integrate communication tools other than the internet to reach minority, rural, and older persons

25. Reflect on an Inspiration • “We have before us not only an opportunity, but an historic duty. It is in our hands to join our strength, taking sustenance from our diversity, honoring our rich and varied traditions and cultures, but acting together for the benefit of us all.” Kwame Nkrumah, President of Ghana

26. We wish to thank… • Today’s participants • Chicago CPP Coalition, National Parkinson Foundation, Project Directors: Ruth Hagestuen, Gladys González-Ramos, Elaine Cohen • PDtrials collaborators: American Parkinson’s Disease Association, National Parkinson Foundation, Michael J. Fox Foundation, Parkinson’s Action Network, The Parkinson’s Alliance, and We Move.