Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

Abstract

PurposeSince 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI’s evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners.MethodsDetailed quantitative and qualitative information collected annually from investigators and their partners was analyzed via descriptive statistics and cross-sectional qualitative content and thematic analysis, and compared against the outcomes expected from the evaluation framework and its underlying conceptual model.ResultsThe data support the role of engaged research partners in refinements to the research questions, selection of interventions to compare, choice of study outcomes and how they are measured, contributions to strategies for recruitment, and ensuring studies are patient-centered.ConclusionsThe evaluation framework and the underlying conceptual model are supported by results to date. PCORI will continue to assess the effects of engagement as the funded projects progress toward completion, dissemination, and uptake into clinical decision making.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-017-1581-x) contains supplementary material, which is available to authorized users.

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

“…For the current study, partners responded to two open‐ended questions about (a) their main reason for wanting to contribute to the research project and (b) how their involvement in the project changed their lives (questions 2 and 6 in the WE‐ENACT survey document). Analyses of other survey questions are reported elsewhere …”

Value in Hepatitis C Virus Treatment: A Patient-Centered Cost-Effectiveness Analysis

“…In the United States (US), the Patient-Centered Outcomes Research Institute (PCORI) supports patient-centered comparative effectiveness research (CER) along with other patient-centered research [1]. Created with the passage of the Patient Protection and Affordable Care Act in 2010, this relatively new institute has allocated over $2 billion in research projects to fulfill its mission of producing and promoting evidence-based information that comes from research guided by patients [2].…”

Integrating Parents in Neonatal and Pediatric Research

“…Parents with multiple different backgrounds, parents of NICU patients, of chronically ill children, and of others who have accessed acute medical services, are all likely to have different perspectives. The NIH (National Institute of Health) and PCORI (Patient-Centered Outcomes Research Institute) and many others have expressed their desire to have stakeholder groups at the table, including patients [14]. Yet in neonatology and pediatrics, parents are not routinely integrated in setting research priorities.…”

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