Author(s)
Hanna ML1, Oehrlein EM2, Perfetto EM2, Astratinei V3, Berner T4, Burke LB5, Camp R6, Hareendran A7, Harrington R8, Houÿez F9, Patrick DL10, Scott A11, von Gizycki R12, Wheeler R13
1School of Pharmacy, University of Maryland, Baltimore, MD, USA, 2University of Maryland, School of Pharmacy, Baltimore, MD, USA, 3Melanom Romania, Bucharest, Romania, 4Baxalta, Bannockburn, IL, USA, 5Study Endpoints and Labeling Development, ONDIO, CDER, U.S. Food & Drug Administration, Silver Spring, MD, USA, 6European Patients' Academy (EUPATI), Barcelona, Spain, 7Evidera, London, UK, 8Astellas Medical Affairs Americas, Northbrook, IL, USA, 9EURORDIS, Paris, France, 10University of Washington, Seattle, WA, USA, 11SEAS Capital Partners, Plymouth, MI, USA, 12Pro Retina Europe, Berllin, Germany, 13Leber Hereditary Optic Neuropathy, Winchester, UK
OBJECTIVES: ISPOR’s Patient Engagement in Research Working Group convened to standardize terms and definitions describing patient engagement and centeredness for use in ISPOR work and communications. To inform its work, a systematic review was conducted to identify existing definitions for “patient engagement,” “patient centeredness,” and related terms in the context of research and health care practice. Themes derived from identified terms and definitions were used to develop draft definitions for ISPOR use. METHODS: Peer-reviewed literature was searched from January 1, 2006 to March 31, 2016 using PubMed and EMBASE. The list of terms searched included “patient” with: “engagement”, “involvement”, “participation”, “centeredness”, “focused”, and “oriented”. Abstracts were screened for relevance independently by 2 researchers, followed by full text review to extract definitions, and then assembled in an Excel database. Disagreements were resolved by consensus; a third researcher resolved remaining discrepancies. A priori inclusion criteria required: a definition of a pre-specified term, association with health care research or provision, and in English language. Definitions were abstracted and classified by country, context of use, contributing stakeholder group, and whether original versus being cited. Grounded theory methods were used to identify emergent themes which were incorporated into a framework of meaningful attributes for defining “patient engagement” and “patient centeredness”. RESULTS: Abstracts for 1371 publications were reviewed for terms and definitions. Analyses of identified and categorized definition themes (e.g., patient-driven outcomes and assessing risk/benefit) will be discussed. Final themes will be presented (pending full-text review completion); draft definitions will be provided for discussion and debate. CONCLUSIONS: The resulting themes lay the foundation for draft recommended ISPOR definitions for “patient engagement” and “patient centeredness” and are put forth by the Patient Engagement in Research Working Group for consideration by the ISPOR membership.
Conference/Value in Health Info
2016-10, ISPOR Europe 2016, Vienna, Austria
Value in Health, Vol. 19, No. 7 (November 2016)
Code
PHP270
Topic
Health Service Delivery & Process of Care, Organizational Practices
Topic Subcategory
Academic & Educational, Health Care Research
Disease
Multiple Diseases
