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  • TISPORa non-profit 501(c)(3) organization

    20 Nassau Street, Suite 307Princeton, NJ 08542 USA Tel: 609-252-1305 Fax: 609-252-1306 email: info@ispor.org Internet: www.ispor.org

    1999-2000 EXECUTIVE BOARD

    PresidentBryan Luce PhD, MBAMEDTAP Internationalluce@medtap.com

    President-ElectJon Clouse RPh, MSIngenix-Kern McNeiljclouse@uhc.com

    Past PresidentRobert S. Epstein MD, MSrobert_epstein@merck.com

    DirectorsDiana Brixner RPh, PhDdiana.brixner@pharma.novartis.com

    Peter Davey MD, FRCPP.G.DAVEY@dundee.ac.uk

    Karen Rascati RPh, PhDkrascati@mail.utexas.edu

    Adrian Towse MA, Mphilatowse@abpi.org.uk

    Gordon Vanscoy PharmD, MBAgvanscoy@stadtlander.com

    Executive DirectorMarilyn Dix Smith RPh, PhDmdsmith@ispor.org

    ISPOR NEWS EditorDonna Rindress PhDnewseditor@ispor.org

    UNITING SCIENCE AND PRACTICE

    VOL. 6, NO. 2 MAR/APR 2000 INTERNATIONAL SOCIETY FOR PHARMACOECONOMICS AND OUTCOMES RESEARCH

    IN THISISSUE

    Distinguished ISPOR Members Head Up theISPOR Health Science Steering Committee

    News

    1_ ISPORs Health Science Steering Committee

    3_ Fireside Chat with ISPOR President Bryan Luce PhD, MPH

    4_ ISPORs Board of Directors Actions

    6_ News Briefs from Around the World

    8_ Student Corner

    8_ Student Networking Group

    9_ Bulletin Board

    10_ Using Pharmacoeconomics & Outcomes Research Innovatively

    17_ ISPOR 5th Annual International Meeting Events Chart

    18_ ISPOR 5th Annual International Meeting Summary of Events

    19_ ISPOR 5th Annual International Meeting Registration

    The ISPOR Board of Directors recently

    approved the formation of the ISPOR Health

    Science (HS) Steering Committee. The

    objective of this HS Steering Committee is

    to build on the initiatives of the multi-

    disciplinary Cost-effectiveness in Health and

    Medicine Panel appointed by the US Public

    Health Service (whose recommendations

    were published in Cost-effectiveness in Health

    and Medicine, edited by Gold, Siegel, Russell,

    and Weinstein), the ISPOR Advisory Panels

    on Pharmacoeconomics Issues (whose recom-

    mendations were published in VALUE IN

    HEALTH Vol. 2, No. 2 [March-April, 1999]),

    and other outcomes research practice

    standard publications.

    The goals of the ISPOR Health SciencePolicy Task Forces are to:

    1. Develop and disseminate good practice

    standards in health outcomes research and

    its use in decision making:

    To address the specific methodological

    issues identified for each pharma-

    coeconomic / outcomes research

    methodology;

    To develop consensus on solutions to

    these issues through programming,

    surveys, or other means of promotion.

    To publish these results as good research

    practices, code of ethics, or policy

    statements.

    2. Develop other resources for influencing

    public healthcare policy.

  • 2

    3. Influence public healthcare policy-making on the basis of goodscientific practices to improve the use of scientific information(i.e. pharmacoeconomic/health economic and healthcareoutcomes information) in healthcare decision-making and todevelop awareness of these good research practices, code ofethics, or policy statements through programs, workshops, ortraining programs with healthcare decision-makers.

    The HS Steering Committee Chair is:Nicolaas Otten PharmD, Director Pharmaceutical & ExtramuralResearch, Canadian Coordinating Office for Health Technology,Ottawa, Ontario, Canada

    The HS Steering Committee Task Forcesand Chairs are:Task Force on Good Research Practices Prospective StudiesLouis A. Morris PhD, Senior Vice President and ManagingDirector of the Marketing and Regulatory Consulting Division ofSCP Communications, Melville, New York, USA

    Task Force on Good Research Practices Modeling StudiesMilton Weinstein PhD, Professor Health Policy & Management,Harvard School of Public Health, Center for Risk Analysis,Boston, Massachusetts, USA

    Task Force on Good Research Practices RetrospectiveDatabase StudiesBrenda Motheral RPh, PhD, MBA, Assistant Professor, Universityof Arizona, College of Pharmacy, Tuscon, Arizona, USA

    Task Force on Good Research Practices-Outcomes Assessmentusing Quality of Life IndicatorsPaul Kind Mphil, Senior Research Fellow, University of York,Centre for Health Economics, York, UK

    Task Force on Use of Pharmacoeconomic / Health EconomicInformation in Healthcare Decision-makingMichael Drummond PhD, Director, University of York,Centre for Health Economics, York, UK

    Task Force on Medical Information AccessKarl Matuszewski MS, PharmD, Director, Technology Assessment, University HealthSystem Consortium, ClinicalPractice Advancement Center, Oak Brook, Illinois, USA

    Task Force on Code of EthicsFrank Palumbo JD, PhD, Director, University of Maryland Centeron Drugs & Public Policy, Baltimore, Maryland, USA

    Each of the Task Force will have its own agenda, but areascommon to two or more Task Forces will be coordinated throughthe Steering Committee. In particular, we want to develop

    comprehensive good research practices (toolboxes) for themajor methodological areas to provide guidance to theresearchers. Second, we would like to develop levels of evidenceor checkboxes for those components that are consideredessential. In some areas, such as use of administrative databases,there is very little in the way of current published good researchpractices. For others, some work has begun (e.g., modeling) fromwhich we can provide further clarification and enhancementwhile others (e.g. quality of life) have been clarified and acceptedin some jurisdictions.

    The four Task Forces which will be primarily developingtoolboxes for the outcomes researcher are: Task Force on Good Research Practices Prospective Studies Task Force on Good Research Practices Modeling Studies Task Force on Good Research Practices Retrospective

    Database Studies Task Force on Good Research Practices Outcomes Assessment

    using Quality of Life Indicators

    The Task Forces must address the ethical issues to consider whenconducting the types of outcomes research given above, as well asthe issues to address in assuring access to medical information(such as assuring patient confidentiality), are: Task Force on a Code of Ethics Task Force on Medical Information Access

    The Task Force must act as a two-way street to assure that thegood research practices incorporate the needs and reality checksof healthcare decision-maker and must be the translator of thesegood research practices as well as develop a toolbox for thehealthcare decision-maker in interpreting and using outcomesstudies is: Task Force on Use of Pharmacoeconomic / Health Economic /

    Outcomes Research Information in Healthcare Decision-making

    The diagram below illustrates the overlap in missions.

    continued from cover

    Good ResearchPractices

    Prospective Studies

    Good ResearchPractices

    Retrospective Database Studies

    Code of Ethics

    Medical Info Access

    Good Research Practices QoL

    Outcomes Assessment

    Good Research Practices

    Modeling Studies

    Use of Pharmacoeconomics / Health Economic / Outcomes Research Information

    on Healthcare Decision Making

  • A

    3

    from Bryan Luce PhD, MPH, 1999-2000 ISPOR President

    FIRESIDE CHATwith the ISPOR President

    Bridging the Gap: AWake-up Call!

    The mission of theInternational Society forPharmacoeconomics andOutcomes Research is totranslate pharmacoeconomicsand outcomes research intopractice to ensure that societyallocates health care resourceswisely, fairly and efficiently.

    At our Strategic Planning Retreat last

    Autumn, the ISPOR Board decided that

    its highest priorities for new initiatives

    was bridging the gap between the

    production of health economic and

    outcomes research information and the

    use of it in health care decision-making.

    We have yet to make significant

    progress in closing this gapa term

    which may be better labeled chasm.

    The issue was brought to the fore at

    Hilton Head earlier this month where I

    participated in a session at the annual

    DIA Quality of Life conference. My job

    was to describe ISPORs role and

    activities relative to health-related

    quality of life. I shared the platform

    with Dr. Ivan Borovsky, President-elect

    of the International Society of Quality

    of Life (ISOQOL) who was to give a

    parallel presentation as to his Societys

    role. Without coordinating

    presentations, our respective remarks

    made obvious that we had very

    different views of the roles of our two

    societies. According to Dr. Borovsky,

    ISOQOLs role is primarily focused on

    technically improving the state of

    health-related quality of life (HRQL)

    research, while I saw ISPOR as more

    focused on the policy of disseminating

    and using HRQL information for health

    care decision-making. When asked my

    opinion as to whether the HRQL

    evidence was being used systematically

    in health care decisions, I had to answer

    that I saw very little evidence of it.

    This is both ironic and unfortunate.

    Ironic in that health-related quality of

    life endpoints are now virtually

    standard elements of most major drug

    clinical protocols and are increasingly

    included as measures of clinical efficacy

    and even part of the labeling. Further,

    health-related quality of life is almost

    purely a patient issue, secondarily a

    patient family issue. When patients seek

    health care, they seek first and for

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