The goal of the program on Quality, Access and Delivery of Parkinson's Care is to improve the quality of life of persons with Parkinson's Disease (PWP) by improving the availability of effective treatments and supportive services to patients and families. This goal is accomplished by conduct of studies on the organization and financing of care and by the development of concepts, program designs, communication strategies and advocacy positions to implement more effective diagnosis and treatment of PWP.
The theme of QuADPaC activities is the development of “Strategies for Treatment of Chronic Disease in an Era of Scientific Discovery.” Key QuADPaC programs are designed capitalize on the advances in science for the benefit of patients, by facilitating the testing and approval of new treatments in the “Parkinson’s - FDA - Industry Initiative” and by preparing the health care system to take full advantage of new discoveries in the “Parkinson’s Quality Initiative.”
Approach
The Program identifies needs and endeavors to supply information and designs to plan, implement, and manage more effective health services for PD.
The Program is conducted with the collaboration and support of a wide range of interested health service and voluntary health organizations, who are engaged to the maximum extent possible in cooperative ventures to fund and carry out the purposes of this initiative.
Included are the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), and other government health agencies which are enlisted to investigate issues of patient care and epidemiology for PD.
Program Activities
The PDF program on Quality, Access and Delivery of Parkinson's Care will systematically build a foundation for the delivery of high quality, comprehensive Parkinson's Care by encouraging, fostering or directing research and development projects on interrelated health services topics.
Key StaffAn assessment of the Status of Parkinson's Care in the U.S. has been prepared based on a review of published literature and discussions with professionals in the field. A mail survey on "Access to Parkinson's Care" has been distributed and the nearly 5000 responses are being analyzed. Preliminary data on the use and coverage of PD treatments are available. The PD Access Survey is now available on-line for PD patients or caregivers. In conjunction with the Sergievsky Center at Columbia University studies have been initiated on the "relation between Parkinson's disease outcomes, resource use and expenditures," including use of specialty and rehabilitative services in socioeconomically vulnerable populations. Highlights from initial studies are available. An "evidence based review" of the scientific basis for alternative PD treatments, instigated by QADPC, has been initiated by AHRQ to build on similar work in process of the Movement Disorder Society. A presentation entitled, "Public Health Challenges for Parkinson's Disease in the US" was delivered to the European Parkinson's Disease Association bi-annual meeting in Vienna, Austria on November 9, 2000.
The QADPC Program is directed by Perry D. Cohen, Ph.D., an experienced health services researcher and management consultant and a PWP. (Here, Dr. Cohen is seen with Mr. Robin Elliott, Executive Director of PDF.)Financial Support
Funding is from the generosity of private foundations, individual donations, as well as grants and contracts. Seed funding has been obtained from the Atlanta Jewish Federation Generations Fund, and initial research on health care costs and access to Parkinson's services has been funded by a grant from the Sol Goldman Family Foundation.Contributions both large and small are welcomed and encouraged. Checks should be directed to "QADPC Program" c/o Parkinson's Disease Foundation, CPMC, 710 West 168th Street, Third Floor, New York, NY 10032. Inquire at 800-457-6676 regarding contributions of securities and other assets