Tuesday, August 5, 2014



During October 2013 I posted an article on highlights from the recent World Parkinson Congress (WPC) in Montreal.  Here is a segment of that article:

We (Linda and I) arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings.  There are seven different research groups that address a variety of different PD categories.  This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input".  We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.

This new development is part of movement toward more patient engagement in the PD world.  It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.

This new direction in healthcare, which was very exciting for many of my fellow PWPs who had campaigned for the medical community to place greater emphasis on the value that can be provided by patients and caregivers, apparently flowed out of the patient-centered outcomes provision of the Affordable Care Act that became law in 2010.  As a result, the Patient Centered Outcome Research Institute (PCORI), was established in late 2010, and made research grant funding available consistent with their mission statement:

The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.

PDF works closely with PCORI in conjunction with it's PAIR program.  A PWP friend and PAIR colleague in the Denver area, Diane Cook, who is also a member of the PDF People with Parkinson's Advisory Council, established a new program with Dr. Benzi Kluger,  head of the University of Colorado Hospital (UCH) Neurology department, that is being funded by a PDF grant.  The program involves Denver area PAIR associates working with UCH neurology researchers for a 1-year period in order to evaluate objectively the value of patient participation in research.

I have the honor of working with my doctor, Benzi Kluger, (who kindly wrote the foreword for my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia, on the planning and implementation of a patient-centered clinical research project that will focus on the PD palliative care process.  It is hoped that this will lead to identification of specific, actionable opportunities to improve patient care and quality of life for PWP's, caregivers, and their families starting at diagnosis and ending with the death of the patient.  A patient advisory council has been established to provide input throughout the research planning and implementation process.  I will provide more information about this project in the future.

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