Program Agenda for
Quality, Access, and Delivery of Parkinson's Care Update -- May 2001 |
|
Program Agenda for
Quality, Access, and Delivery of Parkinson's Care Update -- May 2001 |
Strategies for Treatment of Chronic Disease
in an Era of Scientific DiscoveryThe goal of the QuADPaC is to improve the quality of life of persons with Parkinson's Disease (PWP) by improving the availability and optimal utilization of effective treatments and supportive services for patients and families. This goal is accomplished by action oriented research and policy development aimed at application of the best current medical science to the treatment of the broadest array of PWP.
The Program is conducted with the collaboration and support of a wide range of interested public and private health services providers, insurers, pharmaceutical companies, and voluntary health organizations, as well as with government agencies and academic researchers.
Specific objectives of QuADPaC
- accelerate the translation of advances in science into new safe and effective treatments that halt or reverse the progression and debilitative effects of PD.
- facilitate regulatory approval and widespread use of new prescription drugs and other advances in medical science.
- conduct studies on the organization and financing of care
- develop concepts, program designs, communication strategies for improvements in organization of care
The theme of these objectives is the “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.” Together these public health initiatives will facilitate the delivery of new, more effective treatments for PD that improve the health of the population and pave the way for similar advances for a range of chronic diseases.
- develop advocacy positions to implement more effective diagnosis and treatment of PWP.
Parkinson’s – FDA– Industry Initiative
In 2001 QuADPaC launched the Parkinson's - FDA - Industry Initiative to expand the role of patient advocates beyond lobbying for basic science to address the considerable resources of the pharmaceutical industry The goal is to facilitate the timely availability of improved treatments (cures) to Americans by enhancing the evaluation of safe and effective and new treatments for Parkinson’s Disease. Proposals have been developed to provide the unique patient perspective on issues regarding clinical trial protocols, selection of endpoints for safety and efficacy, and appraisal of risk-benefit tradeoffs for regulatory decisions. For sponsors of clinical studies, a cadre of knowledgeable patient advocates in the field work to facilitate the conduct of studies and put a face on the urgency for PWP of administering research expeditiously.
Clinical Research Advocates: The heart of this initiative is the network of patient advocates that will work on the front lines in clinical research settings to preform a number of functions aimed at facilitating research. Drawing on our most valuable asset, the people with Parkinson's (PWP), the idea is to create an effective national grassroots network of PWP who serve as research ombudsmen to facilitate the process of research and development of new treatments, and in general put the face of the patient and the urgency that we feel in contact with our various constituencies.
Status: This initiative grew out of Dr. Perry Cohen’s role as the first patient representative for Parkinson’s Disease at the FDA on the Deep Brain Stimulation Advisory Committee. The Office of Special Health Initiatives in FDA has offered training and consultation to cultivate this role, and initial meetings with the Director and staff of the Division of Neuropharmacological Drug Products at the FDA have confirmed the receptivity of the key government officials to include consumer input in their processes. Collaboration on this effort has been initiated with industry through the Pharmaceutical Research and Manufacturers of America (PhRMA) and with medical care providers through the American Academy of Neurology (AAN).
Parkinson's Quality Initiative
The quality initiative is an effort to improve the quality of care to all PWP in the community by applying scientific evidence to identify the best treatments for PD and by expanding access to the most effective treatments for PD.
Prevention: This initiative takes a public health perspective on quality and access to care by focusing on management of outcomes and improvement of the quality of life of the population of patients. The quality initiative will develop mechanisms for diffusion of scientific information and organization of comprehensive care systems which are used to manage outcomes and quality and hence prevent complications (tertiary prevention) that may result from advanced PD. As nerve growth factors and other neuro-protective agents emerge from the lab into practice, these public health mechanisms will be the foundation for interventions for early detection of PD. Primary prevention will be possible once research uncovers the environmental causes of PD and the genetic susceptibilities to of individuals.
Public Health Capacity: The quality initiative is a component of larger public health action plan whose goal is to develop organizational capacity and the infrastructure of knowledge and information systems to plan and carry out population interventions for PD care. The public health action plan, designed to help current PWP will be derived from epidemiological data and health services research along with professional expertise. Targets will be identified for education, program development and dissemination of more effective technology and procedures for diagnosis, treatment, rehabilitation, and long term maintenance of Parkinson's patients and families. Integral to development of comprehensive health programs, this effort is essential to assure that expected advances in science and treatment for PD resulting from increased funding for medical research are put into widespread practice.Workshop on Quality of Care for PD: A Steering Committee has been formed which seeks to convene a workshop in 2001 to develop an action plan to answer questions about what is currently known about the quality of PD care in the US and to make recommendations for an action plan to enhance access to high quality of PD care.
Research and Advocacy Activities
Listed below are brief descriptions of specific activities and accomplishments of QuADPaC. These tasks are designed to systematically improve the accessibility of high quality of Parkinson's Care. As indicated, a number of projects are funded or carried out directly by QuADPaC staff, and other activities entail collaborations with different organizations.
Research on Access to Parkinson's Care
- The current Status of Parkinson's Care has been assessed based on a review of published data and discussions with leading experts on PD.
- Nearly 3000 responses to the “Access to Parkinson’s Care” Survey distributed to the Parkinson's Disease Foundation mailing list in 1999 were analyzed. A Preliminary analysis of data from the survey shows disparities between those services most heavily used (e.g., prescription drugs) and those most often covered by health insurance (e.g., brain surgery). Initial Findings appeared in PDF News.
A revised version of the survey is now on-line for continuous monitoring of these issues.
- The results of the Access survey along with findings from other work with health agencies, were the subject of a presentation on "Public Health Challenges for PD in the US" for the European Parkinson’s Disease Association Conference in November, 2000.
Research on Cost and Resource Use
- QuADPaC contributed resources and collaborated with the Sergievsky Center at Columbia University on an study of the Medicare costs and use of resources and the related outcomes for Parkinson’s treatment for an elderly population. The principal investigator for the study, presented initial results at the American Academy of Neurology 2001 Annual Meeting. Highlights from the initial research are available on-line. A research paper has been submitted to the “New England Journal of Medicine”.
- QuADPaC is a participant with the NIH and other PD organizations on the development of a PD patient registry for research.
- QuADPaC is collaborating with the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) at CDC on investigations of incidence/ prevalence and diagnosis/treatment of PD based on Medicare claims data
Advocacy for Public Health Research
- The NIH Research Agenda for Parkinson's Disease includes the basic tools to develop the QuADPaC program: epidemiology and outcomes research.
- An “Evidence Based Review" of the scientific basis for PD treatments is now nearing completion by the Agency for Health Quality and Research (AHRQ). In conjunction with a similar work of the Movement Disorder Society, also nearing completion, this research will help identify practice guidelines as well as gaps in research. A research initiative of the NINDS and NIMH on "Depression and Parkinson's Disease" has been launched based in part on advocacy pointing out the preliminary findings from the Movement Disorder Society's evidenced based review that found almost no high quality research into this significant source of disability and reduction in quality of life for as many as half of PD patients.
- Activities to promote collaboration among Federal health agencies to do the background research needed for Public Health programs for PD have been reinforced by the US House Appropriations Committee report (HR106-645) which states: “The Committee also urges NINDS to collaborate with the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, and private sector foundations to expand research to provide the groundwork of information and intervention strategies for surveillance and control of suffering and disability associated with the disease”.
- The National Center for Health Statistics (NCHS) has been encouraged to supplement current data collection efforts with more explicit attention to PD, and in 1999 for the first time a specific question on PD appeared on the National Health Interview Survey. In August 2000, a task force with staff from NINDS, NCHS, and QuADPaC convened to identify issues and problems to address in order to field a neurodegenerative supplement to a National survey.
- On a local level, the Commissioner of Insurance in the District of Columbia has initiated a “Prescription Drug Task-Force” in response to the May 1999 story in Washington Post , “ In Insurance Curbs: A Prescription for Hardship” and the suggestion of Dr. Cohen. The task force was started to establish programs that address the problem of increasing costs of medications in the face of increasing limits on coverage for medications. Included are AARP, Families USA, Health Insurance Association of America, DC Public Health Department, and George Washington University.