After conducting this unique systematic review and qualitative analysis with patients included throughout the full research process the Patient Engagement in Research Working Group of the ISPOR Patient-Centered Special Interest Group proposes the following definition of patient engagement in research:
The active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, where research decision making is guided by patients’ contributions as partners, recognizing their specific experiences, values, and expertise.
“Clarity on what patient-centeredness and patient engagement mean in the context of health economics and outcomes research is increasingly relevant and a high priority for health economics stakeholders,” said Rachel Harrington, PharmD, National Committee for Quality Assurance, Washington, DC, USA. “To this end, ISPOR established a working group to conduct a comprehensive review of existing definitions of patient engagement, patient-centeredness, and related concepts, with the goal of generating a robust, evidence-based, scalable definition of patient engagement fit for use in the context of health research.”
To ensure an adequate identification and coding process, the group determined from the outset that a multistakeholder approach representing the perspectives of researchers (both academic and industry) and patients was required. Accordingly, a study team representing all of these groups was maintained across design, methods selection, analysis, and interpretation. “The role of patients as partners in health technology development has increased over the past decade, driven by the expectation of regulatory bodies, health technology assessment authorities, and patients themselves that patients’ needs and priorities be understood,” said Dr Harrington. “Yet ambiguity on the definition of ‘patient engagement’ has been a barrier to fully implementing patient engagement in research. Clarity on what patient-centeredness and patient engagement mean in the context of health economics and outcomes research is increasingly relevant for members of ISPOR and similar research organizations.”
The authors stress that several next steps should be taken to continue advancing the understanding and implementation of patient engagement in research. Most pressingly, there is a need to determine how to operationalize, implement, and measure the success of patient-engagement initiatives across the health economics and outcomes research landscape and to learn from any challenges. Such an activity must account for what “good” engagement looks like from both the researcher and patient perspectives.
ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE®-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.
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ABOUT VALUE IN HEALTH
Value in Health (ISSN 1098-3015) is an international, indexed journal that publishes original research and health policy articles that advance the field of health economics and outcomes research to help healthcare leaders make evidence-based decisions. The journal’s 2018 impact factor score is 5.037. Value in Health is ranked 5th of 98 journals in healthcare sciences and services, 4th of 81 journals in health policy and services, and 11th of 363 journals in economics. Value in Health is a monthly publication that circulates to more than 10,000 readers around the world.
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