Last year, I wrote a blog post about the World Parkinson Congress (WPC) in Montreal, which highlighted a, “movement toward more patient engagement in the PD world.” Before giving an update on patient engagement in my own community in Colorado, here is a brief excerpt from that post from October 2013.
We (Linda, my wife and fellow PDF Research Advocate, and I) arrived on Saturday before the Congress started in order to participate in the Parkinson Study Group (PSG) meetings. This year for the first time, because of the Parkinson’s Disease Foundation (PDF), PDF Research Advocates such as myself (members of Parkinson’s Advocates in Research (PAIR) program) were invited to provide “patient input.” Linda and I sat in on meetings of the Neurosurgical group and Cognitive/Psychiatric group and appreciated the opportunity to interact with doctors and researchers from all over the US. This new development is part of movement toward more patient engagement in the PD world. It is encouraging for people with PD 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.
Patient Engagement in 2014
Nearly a year after I wrote this post, this new direction in healthcare is still exciting for many people with Parkinson’s disease who had campaigned for the medical community to place greater emphasis on the value that can be provided by patients and caregivers.
It has in part, 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 Outcomes Research Institute (PCORI), was established in late 2010, and made research grant funding available consistent with their mission to, “help people make informed healthcare decisions, and improve 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, Patient Engagement & PCORI
PDF and its PAIR program, including Research Advocates like me, are working closely with PCORI. Here are two exciting collaborations happening in my home state of Colorado.
- A friend and person with PD from the Denver area, Diane Cook, who is also a fellow PDF Research Advocate and a member of the PDF People with Parkinson’s Advisory Council, established a new program with Benzi Kluger, M.D., head of the University of Colorado Hospital (UCH) Neurology department, that is being funded by a PDF grant. The program involves Denver area PDF Research Advocates working with UCH neurology researchers for one year in order to evaluate objectively the value of patient participation in research.
- I have the honor of working with my doctor, the same Dr. 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 people with PD, 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 look forward to providing more information about this project in the future for the PD community. It is exciting to see the idea of patient engagement progress and to see people with PD such as myself and Diane be a part of it.
Kirk Hall is a person living with Parkinson’s disease. He and his wife Linda, of Denver, CO, are PDF Research Advocates. Kirk has written three books on living with PD, including Carson And His Shaky Paws Grampa, Carina and Her Care Partner Gramma and Windows on Parkinson’s Disease.