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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. 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.

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

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.

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

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

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

Outreach Examples from Two “Natural Helpers”

  • In the Hispanic community

  • In the African American community

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.



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

  • <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.

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.

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.

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

What One Health Charity isDoing to Address the Problem


A collaborative initiative of Parkinson’s

organizations dedicated to

increasing education and awareness

about clinical trials

Foundational Components website

Monthly e-bulletin

Twice-yearly print bulletin

Educational materials

Staff outreach worker

Periodic Components


Clinical Research Learning Institute

PDtrials Education and Awareness

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

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



II. PDtrials

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?

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?

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

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

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

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.

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