Abstract
BACKGROUNDPatients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact.OBJECTIVEWe aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned.DESIGNA self-report instrument was completed by researchers between 6 and 12 months following project initiation.PARTICIPANTSForty-seven principal investigators or their designees (94 % response rate) participated in the study.MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured.KEY RESULTSMost (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as “critically important” facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders’ practical needs.CONCLUSIONSPCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base.Electronic supplementary materialThe online version of this article (doi:10.1007/s11606-015-3450-z) contains supplementary material, which is available to authorized users.
Highlights
Patients and other key healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research.[1,2] Patients and stakeholders can be engaged across stages of research including identifying study topics, choosing hypotheses, analyzing data, and disseminating findings[3,4,5]
Investigators most commonly reported engaging patients/ consumers (90 %), clinicians (87 %), clinic/hospital or health system representatives (44 %), caregivers/family members (41 %), or patient or caregiver advocacy organizations (41 %) (Fig. 1)
Compared to the published literature, which reflects lesser engagement of other types of stakeholders,[1,18] many Patient-Centered Outcomes Research Institute (PCORI) Pilot Projects reported engaging clinicians (> 85 %), and a substantial number of projects reported engaging with caregivers, advocacy organizations, and health system representatives (>40 % for each)
Summary
Patients and other key healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research.[1,2] Patients and stakeholders can be engaged across stages of research including identifying study topics, choosing hypotheses, analyzing data, and disseminating findings[3,4,5] (see Table 1 for illustrative examples). OBJECTIVE: We aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned. Reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as Bcritically important^ facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). This study identifies early lessons and Electronic supplementary material The online version of this article (doi:10.1007/s11606-015-3450-z) contains supplementary material, which is available to authorized users
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