Summary of Experience
 

Dr. Perry Cohen is a strategic planner, organizational analyst and manager with over 20 years experience in health, social services, managed care, and employee benefits. He is an effective group facilitator with strong conceptual skills. He has proven competence as an analyst, writer, and study manager. Dr. Cohen's skills include organizational assessment and change, planning studies, and performance measurement.  He is an active participant and leader in professional and community activities.  (click on highlighted topics for specific details)

PARKINSON'S DISEASE ACTIVITIES.  Dr. Cohen has been an active participant and leader on the national level in advocacy activities for Parkinson's issues, and on a local level as a support group leader and an officer of a local chapter.

OTHER COMMUNITY ACTIVITIES.  Dr. Cohen has been an active participant and leader on the Boards of a number of prominent institutions in health care services and insurance, health care philanthropy, and biomedical research. He has also been an active participant and officer in professional organizations related to health planning and organization development.

EDUCATION AND EMPLOYMENT HISTORY.  Dr. Cohen was educated in management science, market research and organization behavior with a MS and Ph.D. from MIT, Sloan School of Management and a BS (Honors) from Carnegie-Mellon University.  He has worked as a health care management consultant  for over 20 years in his firm, Perry Cohen Associates.

PROFESSIONAL EXPERIENCE.  His consulting career has focused on public health, medical care and social services. It has spanned nearly a hundred assignments including multi-year organizational evaluations, community health assessments, surveys and market research, facilitation of planning and organizational change, and development of business plans for new services.

PUBLICATIONS AND PRESENTATIONS. The findings from his work have been prepared for professional journals and for  management as well as professional audiences.

QuADPaC

Program Overview .. Research Agenda .. Program Methods .. Program Management

Status of Parkinson's Care  .. Cost Study Highlights .. EPDA Presentation

PD Access Survey .. Preliminary Results

Parkinson's-FDA-Industry Initiative

Parkinson's Care Networks ..  Links

 

Program Director .  Quality, Access, and Delivery of Parkinson's Care (QuADPaC), Parkinson's Disease Foundation,  1998 --

• Conducted an assessment of the Status of Parkinson's Care in the U.S. based on a review of published literature and discussions with professionals in the field.
• Designed and analyzed data from the 2950 responses to a mail survey on "Access to Parkinson's Care."  A revised Access Survey is now on-line.
• With the Sergievsky Center at Columbia University, studies have begun on costs,  resource use and outcomes for Parkinson's disease. Highlights from initial studies are available. "The Impact of Comorbid Disease on Resource Use and Expenditures in an Elderly Population with Parkinson's" (Pressley, et.al.) has been accepted for Publication in "Neurology"
• Presented "Public Health Challenges for Parkinson's Disease in the US" at the European Parkinson's Disease Association meeting in Vienna, Austria based on data from the above studies and experiences working with Federal Agencies.
• Instigated an "evidence based review" of the scientific basis for PD treatments conducted by AHRQ (Metaworks, Inc.) to build on similar work in process of the Movement Disorder Society.
• Advocate for Federal epidemiological research to support quality and access to PD care. Promote collaboration among Federal health agencies, as suggested by the US House Appropriations Committee report (HR106-645), to do the background research needed to mount Public Health programs for PD and other neurodegenerative diseases. Examples are: 1) development of reliable field screening techniques to identify persons at risk for PD 2) developent of survey methods for tracking and surveillance of PD in the population 3) development of patient oriented data bases on providers and treatments.

Program Director.    Parkinson's-FDA-Industry Initiative (AKA Parkinson Pipeline Project) to facilitate evaluation and approval of safe, effective, and 'timely' new treatments for Parkinson's Disease

• March, 2000:   Served as first Parkinson's patient representative on an FDA Advisory Committee that recommended approval of Deep Brain Stimulation as treatment for the cardinal motor symptoms of PD. Excerpts from DBS Advisory Committee

• 2001: Background information and relationships established with FDA Office of Special Health Initiatives and Neuropharmacology Products Review Office as well as Industry Associations,  PhRMA and BIO. Three part program designed:

• Consultation to Sponsors of new therapies in pipeline and regulators (FDA) from patient perspective
• Consultation to clinical researcher and advocate for patient on recruitment of human research subjects
• Database and tracking system to inform advocates and patients



• 2002:  Pilot testing and developing resources -- implement test cases and refine concepts. Work with FDA to develop an independent patient advisors concept for patient participation in pre-approval decisions for new drugs. Established confidentiality agreements and working relations with several pharmaceutical companies.  With "pipeline team" developed pilot tracking database.  Prepared grant proposal for study of the impact of patient advocates in clincial research settings on the recruitment, retention and protection of human subjects.

Advocate For PD Research Funding.  Dr. Cohen has been an active advocate in the U.S. Congress and Federal Health Agencies for increased PD research. He was introduced to PD advocacy on the National level at the Parkinson Action Network Forum two weeks after his diagnosis.  He has participated in all PAN Forums since then, and in 2001 he planned a 3-day program on Capitol Hill, including briefings by all Government agencies involved in PD issues and a visit to NIH as well as to congressional offices for advocates who came when PAN did not hold a Forum. 
 

NIH PD Research - NINDS Lead

1996-7:  Lobbied Congress to pass the Morris Udall Bill for Parkinson’s Research. Recruited, trained and collaborated with advocates from other states (e.g. Georgia, Alabama, Indiana). Assisted with development of the Parkinson's Advocacy Steering Committee to enhance coordination among key National Organizations (PAN, NPF, APDA, PDF).

1999:  Initiated a renewed advocacy coordination effort among key National Organizations (PAN, NPF, APDA, PDF) that opened a dialogue with NIH officials in which advocacy groups would have greater involvement in planning focused research efforts for PD.

• Arranged first meeting of PD groups with the Director of NIH along with the Director of the National Institutes of Neurological Diseases and Stroke (NINDS) and the National Institute on Aging (NIA).

• Arranged meeting with  key White House staff (Health Policy Advisor, Science Advisor to the President and Office of Management and Budget Associate Director).

November 1999: Delegate to the NIH Coordinating Council for Parkinson's Disease in . Reactivated by the Director of NINDS in 1999, this inter-institute council includes the Directors of 6 Institutes and for the first time invited the participation of PD Community representatives.

January 2000:  One of eight PD delegates to the Planning Workshop in  that developed the NIH Research Agenda for PD, required by Congress, a 5 year plan that proposed $950M in new research funding.

January 2002: Participant in "Consortium Review" of the NIH Parkinson's Research Agenda.

Beginning October, 2002:  Participant in PD Workgroup to implement initiative of NIH Director to make PD a paradigm of disease oriented research.  With Robin Elliott took lead role on first agenda item: support for clincal trials.

Other NIH Institutes

July 1999: Represented PD advocates in at a research planning conference of the National Institute on Environmental Health Science (NIEHS) on the "Role of Environment in Parkinson's Disease."

September 2000: Initiated liaison with the National Institute of Mental Health on behalf of Parkinson's Advocates, emphasizing the paucity of research in cognitive, emotional aspects of PD.  Revisited 2002.

Beginning January 2001:  Served on NIMH workgroup on Aging and Comorbidities for the Strategic Plan on Mood Disorders Research.

Other Federal Health Agency Liaison

Beginning April 2000: Represented the Parkinson's community on a project of the Agency for Health Research and Quality (AHRQ) and the Kantor Foundation to create consumer oriented "patient outcomes" data bases.

Beginning September 2001: Participant in Patient and Consumer Coalition and as Parkinson's Representative to Advocacy Group events sponsored by FDA and PhRMA on issues about the reauthorization of the Prescription Drug Users Fee Act (PDUFA) and other issues concerning development of safe and effective new treatments.

Association and Consortium Participation

1998: Delegate to the organizational meetings of the Parkinson's Alliance, sponsored by NPF

March 2002: Delegate to first Patient Advocacy Forum of the American Society of Experimental Neuro Therapeutics (ASENT). Member of planning committee for ASCENT Advocacy Forum 2003 meeting.

Beginning November 2002: Cure Parkinson Project -- Organizing Committee for private sector venture fund aimed at accelerating translation of science to therapy

Testimony and Presentations

November 2000: Presentation to European Parkinson's Disease Association  "Public Health Challenges for Parkinson's Disease in the US"

June 2001: Presentation  on "Integration of State and National Level Coalitions" to the California Neuro-Alliance first public policy conference, Sacramento.

November 2001:  Testimony for the Institute of Medicine Committee on Assessment of the System for Protection of Human Research Participants

 June, September 2002:  Testimony for Medicare Advisory Committee on behalf of  national  coverage for Deep Brain Stimulation


Advocate for Local Health Services

Beginning January 2001: Instigated the formation of a "Perscription Drug Task Force" lead by the Commissioner of Insurance in the District of Columbia to address the high and rapidly growing costs of medicine for DC residents. See In Insurance Curbs, a Prescription for Hardship Washington Post, 5/9/99

November 2002: Testified at DC City Council on the need for patient ombudsman office to negotiate the health system.  See A Health Ombudsman for D.C.? in THE SYSTEM : A Weekly Checkup on Health Care Costs and Coverage; Washington Post. Tuesday, September 24, 2002; Page HE03

Member of the DC Coalition for Long Term Care

Support Group Leader and Speaker. 

On a local level, Dr. Cohen initiated and leads a "Young Parkinson's" support group which has been meeting monthly in Chevy Chase, MD since December 1996.  In 1999 a second site was initiated for the Young Parkinson's Group in Annendale VA.

He was involved with the National Capital Chapter of APDA in 1996 as organizer and co-chair of the regional conclave of support group leaders.  In June of 1997 he was elected Vice President of the Chapter.  In December 2000 Dr. Cohen was appointed to the Board of the Capitol Chapter of NPF.

Meeting Colorado Governor with
Board of Parkinson's Association of the Rockies (4/02)


Dr. Cohen is a frequent presenter of "Washington Updates" at the Johns Hopkins Young Parkinson's support group.  He has also addressed support groups and advocacy groups in such locations as Los Angeles, San Francisco, and Denver as well as a number of support groups in the Washington DC area on advocacy issues.



Perry Cohen was diagnosed with Parkinson's Disease (PD) in May 1996.

Perry D. Cohen, Ph.D.   Professional and Community Activities

 

MedStar Research Institute.   Dr. Cohen was elected to the Board of Trustees for this biomedical research arm of the $2B multi-institutional MedStar Health Care System in the Baltimore-Washington area.  During his 3 year term of Office,he served on the Quality Committee and the Education Committee of the Board.  He has facilitated initiation of Parkinson's research in the new neuro-science program at the National Rehabilitation Hospital and has fostered the developement of a Parkinson's research and medical care program in the Medstar system.

Consumer Health Foundation.  Dr. Cohen served two years on the Board of Trustees of  this new Charitable Foundation endowed with assets from sale of a  non-profit HMO. As Chair of the Strategic Options Task Force he lead planning and consensus development for new mission devoted to consumer information and participation in their health care. As Chair of the Nominations Committee he lead development of  policies and recruitment of community leaders to increase Board diversity.

Group Health Association.   For 6 years, Dr. Cohen was a Trustee and Chair of the Planning and Finance Committees of a 150,000 member HMO with 1500 employees and $250 million annual revenues. He led the development of critical financial service performance indicators and annual rates and budgets; he presided over strategic planning and performance assessment; he initiated policies to enhance employee relations and to establish performance based executive compensation policies.

Manpower Analysis and Planning Society of Washington.  Dr. Cohen was President of a local professional society aimed at work force planning and analysis. He  testified before the U.S. Congress on productivity improvement and workforce planning in the Federal Government.

American Public Health Association.  Community Health Planning Section, Program Planning for 107th Annual Meeting; Session on, "Interorganizational Relations for Health Planning".

Other Professional Activities
Capital Area Society for Health Care Planning and Marketing (membership committee)
Association for Health Services Research
Organization Development Network

EDUCATION

Ph.D.    Organization Studies,  M.I.T. Sloan School of Management
M.S.     Marketing, Organization Development,  M.I.T. Sloan School of Management
B.S.      Management Science,  Carnegie-Mellon University, Honors

EMPLOYMENT HISTORY
 

Perry Cohen Associates (since 1979), Principal. Direct all aspects of health care management consulting practice, including marketing, administration, and staffing and project management.

University of Maryland (1991), Adjunct Associate Professor.  Teach course in Graduate School of Administration on Health Care Organizations and Management.

Urban Systems Research and Engineering (1977-79),  Senior Research Consultant. Project management and marketing in health planning and resources.

Association of American Medical Colleges (1975-77),  Research Associate. Surveys of organization and governance of medical centers.

Massachusetts Department of Administration and Finance (1974-75),  Management Analyst. Office of Planning and Management.  Organizational planning and development efforts.

M.I.T. Sloan School of Management (1972-75), Instructor. Graduate courses on Human Factors in Management and Seminar on Organization Development.  Technical Assistant.  Programmer for On-Line Decision Models course.

Massachusetts Blue Cross-Blue Shield (1971-72),  Research Analyst.  Studies of physician reimbursement.

Lockheed-Georgia Company (1968-69),  Operations Research Associate.  Quantitative analysis of operating systems.  Development of a preventive maintenance system for machine tools.

Perry D. Cohen, Ph.D. Illustrative Consulting Assignments

• Conducted organizational assessment, developed phased plan and facilitated consensus among top managers of $1 billion medical products distributor to respond to changing markets by reorganization from functional to product structure.

• Designed process for development of new mission and governance structure among constituents of large membership organization, drafted goal statements and bylaw changes, and obtained approval of governing board to smooth transition to new legal structure.

• Led development of design for performance evaluation among managers  of a $25 million NIH demonstration to coordinate community services for hypertension control; conducted assessments of ten statewide service networks and associated different system structures with health outcomes.
 
• Conducted an assessment of interorganization relations among  community health providers for a local health department that resulted in formation of a cancer consortium among service organizations to more effectively provide prevention services to indigent populations.

 
• Developed business plans for new health services and employee benefits.  Produced strategic objectives, marketing and pricing strategies, financial projections for psycho gerontology services, day treatment mental health services, personalized health communication services, and  corporate elder care services.

 
• Conducted focus group interviews and telephone survey of senior Federal managers that resulted in development of new communication strategies to market occupational health services.

 
• Conducted telephone survey for reinsurance company to identify activities and perceived benefits and needs of HMOs for preventive health programs.

 
• Designed and implemented patient tracking system for a large HMO to manage costs and services for AIDS cases.

"The Impact of Comorbid Disease on Patterns of Resource Use and Expenditures in an Elderly Population with Parkinson's" with Joyce C. Pressley,  Elan D. Louis,  Ming Tang,  Lucien Cote,  Richard Mayeux (In press, Neurology, Jan., 2003)

"Corporate Elder Care - Evaluating the Alternatives."  Employee Benefit News (April, 1991), 32-34.

"New Tools for Mental Health System Managers: Techniques for Service Network Management" (with William TenHoor) in Emerging Directions in State Mental Health System Planning (D.Goodrick, ed.) Alpha Center for Health Planning (March, 1988), 38-49.

"Evaluating Community Collaboration: A Guide to Self Study" (with Susanne Bronheim & Phyllis Magrab). Workbook Series for Providing Services to Children with Handicaps and Their Families.  Georgetown University Child Development Center (May, 1985), 25 pages.

"Community Health Planning from an Interorganizational Perspective."  American Journal of Public Health, 72 (July, 1982) 717-721.

"Medical School and Hospital Affiliation Relationships: An Interorganizational Perspective." Health Care Management Review, 6 (Winter, 1981) 43-50.

    "God and Science: Stem Cell Research" Wash. Post, October 15, 2000. 

    A Health Ombudsman for D.C.? Wash. Post, Tuesday, September 24, 2002; Page HE03

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