ISPOR, the professional society for health economics and outcomes research, held a session this evening, "Defining Patient-Centeredness and Engagement in Health Economics and Outcomes Research: Proposed Definition and Stakeholder Response [F3]," at ISPOR 2018 in Baltimore, MD, USA.
Patient-related initiatives in healthcare are expanding as more and more stakeholders seek to involve patients in drug development, research, and delivery of healthcare. The lack of a common definition for the terms "patient engagement" and "patient-centeredness" has made it difficult to quantify and measure the impact of related initiatives. When these terms are employed, they are often used interchangeably and/or not defined, which can lead to misunderstanding. This lack of a consistent, clear definition for these terms has been highlighted in outcomes research, pharmacoepidemiology, and related fields, as a barrier to implementing and measuring patient engagement in the field.
The session was moderated by Rachel L. Harrington, BA, University of Illinois at Chicago, Chicago, IL, USA. Speakers included Eleanor M. Perfetto, PhD, MS, National Health Council, Washington, DC, USA and University of Maryland School of Pharmacy, Baltimore, MD, USA; Suzanne Schrandt, JD, Arthritis Foundation, Atlanta, GA, USA; and Sarah Donelson, MA, Genentech, San Francisco, CA, USA.
In this session, speakers presented the proposed consensus definition of "patient engagement" suitable for use in the context of health economics and outcomes research. The proposed definition was derived from a multistep process that included a systematic review and qualitative analysis of existing definitions in addition to a multistakeholder review. The speakers shared the implications of and the response to a consensus definition for patient engagement from the perspective of key stakeholders, including patients, policy/research, and industry. The ISPOR Patient-Centered Special Interest Group, comprised of researchers and patient representatives, will submit a manuscript entitled, "Defining Patient Engagement in Research: Results of a Systematic Review and Analysis," to the Society's journal, Value in Health.