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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