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. PROGRAM I:. Community Partners for Parkinson Care (CPP) A Program of the
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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
Community Partners for Parkinson Care (CPP)
A Program of the
National Parkinson Foundation, Inc.
A National Collaborative Program
Led by the
Parkinson’s Disease Foundation
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
Examples of Impact
adults — especially
conditions — are
from clinical trials,
it is this group that
is the first and most
numerous user of
Both patients and their doctors need to understand:
A collaborative initiative of Parkinson’s
organizations dedicated to
increasing education and awareness
about clinical trials
Twice-yearly print bulletin
Staff outreach worker
Clinical Research Learning Institute
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:
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?
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?
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
Kwame Nkrumah, President of Ghana