Abstract
A trend towards charging for access to research findings, tools and databases is becoming more prominent globally. But charging for the use of research tools and databases that are vital to research supporting national and international policy development might be unjustified. Financial barriers to accessing these tools and databases disproportionately affect low- and middle-income countries, who may have greater need for information that fuels research in their areas of concern. However, changing this trend is potentially possible. One example is the experience with the EuroQol-five-dimensional questionnaire (EQ-5D), a generic measure of health status used in economic evaluations for resource allocation decisions. Increasingly, governments and health-care providers are using the EQ-5D tool in patient-reported outcome measures to monitor quality of health-care provision, diagnose and track disease progression, and involve patients in their health care. The EuroQol Group, which owns the intellectual property rights to the EQ-5D, recently terminated their policy of charging for noncommercial, nonresearch uses of the tool. We share a brief history of this development and examine these charging policies in the context of the EQ-5D’s use in national health-care research and policies, reflecting the trends and developments in the use of survey instruments on population health.
Highlights
Cross-country and inter-institutional research collaborations are progressive developments in an increasingly globalized and interdependent world
Given the importance of standard tools for supporting country and global priority-setting, research and development, it is important to examine barriers to their access. One example of this issue is the case of the EuroQolfive-dimensional questionnaire (EQ-5D; EuroQol Group, Rotterdam, Netherlands), a tool for measuring health status
EuroQol Group is managed by the not-for-profit EuroQol Research Foundation, which owns the intellectual property rights to EQ-5D in Europe, North America and other parts of the world
Summary
There can be advantages to charging for use of the EQ-5D. Charging enables the monitoring of the tool’s use and so maintains consistency in its meaning and use. Patient-reported outcome measures are reliable predictors of disease progression to complement traditional indicators (such as tumour markers or tumour response)[23,24] and help doctors, governments and relevant stakeholders to meet the demands and needs of their patients more effectively. Such measures are especially needed by countries and health systems in their journey towards universal health coverage. Changing the policy sets a precedent for future charges for other EQ-5D uses that could restrict the use of the quality-adjusted life years measure on a global level
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