The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) announced today the publication of suggested guidelines on establishing research partnerships with patients. The report of these novel recommendations for outcomes researchers entitled, Emerging Guidelines for Patient Engagement in Research, was published in the March 2017 issue of Value in Health.
"Involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured," said corresponding author Susan Bartlett, PhD, McGill University, Montreal, Quebec, Canada." And while there are many methods of consulting with patients," she added, "consensus on good practice and guidance for establishing collaborative research partnerships is limited. In this report, we describe and discuss different experiences of integrating patients as full research partners in outcomes research from multiple perspectives (e.g., researcher, patient, funder), drawing from three real-world examples."
The authors offer 6 specific principles to guide the integration of patients as full partners in outcomes research: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and patient research partners; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that patient research partners are familiar with and conversant in the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research.
"It is already clear that involving patients as partners in the research process produces positive and lasting improvements," said lead co-author John R. Kirwan, MD, Emeritus Professor at the University of Bristol, Bristol, United Kingdom. The authors highlight that more research is needed to identify the skills and qualities that contribute to successful research partnerships in terms of individual and collective needs, values, and required resources. They also note that further work is needed to develop insights and best practices for training researchers and patients to work well together in designing new measures and implementing outcomes research.