Advancing Methods for Patient and Community Engagement

Abstract

Over a decade ago, the Patient-Centered Outcomes Research Institute (PCORI) was authorized by the Patient Protection and Affordable Care Act of 2010. The purpose of PCORI is to fund comparative clinical effectiveness research (CER) to provide reliable evidence to help patients and their health care providers make informed decisions. The PCORI Methodology Committee was formed by statute to develop methods standards for the conduct of CER that is funded by PCORI. It is not surprising that the need for patient-centeredness standards quickly emerged as one of the first priorities (PCORI, 2012), and it remains a central methods standard today for the conduct of CER (PCORI Methodology Committee, 2019). Since that time, the use of methods for patient and stakeholder engagement has grown, with the PCORI funding portfolio leading to a body of evidence including a conceptual model (Forsythe et al., 2018) and engagement rubric (PCORI, 2014; Sheridan et al., 2018). Because of nursing’s professional role and science, one of the major alignments and opportunities between PCORI and nursing priorities are the methods for engagement of patients and stakeholders (Newhouse et al., 2015). Using the PCORI definition, research engagement includes “the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process—from planning the study, to conducting the study, and disseminating study results” (PCORI, 2018). According to PCORI, Patients and other healthcare stakeholders are equitable partners–as opposed to research subjects–who leverage their lived experience and expertise to influence research to be more patient centered, relevant, and useful. Their early and continued involvement throughout a study can lead to greater use and uptake of research results by patients and stakeholders within the healthcare community. (PCORI, 2018) This special issue highlights innovative methods for engaging patients and community members in research, evidence of the effectiveness of engagement, and lessons learned. Four papers describe diverse methods used to engage patients and community members in specific research projects. Three papers describe innovative models and measures, and the development of a new instrument to guide evaluation of the engagement process. Young and colleagues describe the processes they used to form and engage three groups of stakeholders – a patient advisory board, a provider advisory board, and a technology advisory board – in their PCORI-funded project titled “Patient and Provider Engagement and Empowerment Through Technology Program to Improve Health in Diabetes”. While most of the article is focused on their engagement with the patient advisory board, they also describe their experience bringing the three groups of advisors together and the benefits of their diverse perspectives. Yu and colleagues present four case studies where investigators shared their perspectives on engaging members of underrepresented communities in their studies. Studies engaged immigrant postpartum women, rural farmers, low literate and non-English speaking adults, and persons with intellectual disabilities. Common strategies used by investigators across these cases fell into three themes: building relationships; demonstrating commitment, and showing respect. These authors conclude that engaging underrepresented communities is essential for addressing health disparities. Faulds and colleagues describe collaboration with their university’s College Diabetes Network (CDN) on two studies focused on self-management of Type 1 diabetes mellitus. They describe the CDN member roles in, and contributions to, the projects as co-designers of the mobile app, co-investigator, and consultants. These authors discuss the lack of clarity and variability in how institutional review boards review patient engagement in research when patients are advisors rather than study participants. Rawl and colleagues report the methods and strategies implemented to engage a diverse community advisory board and the contributions they made to a comparative effectiveness trial of interventions to increase colorectal cancer screening. They also report results of qualitative and quantitative evaluations of the board members’ experiences. Recommendations for researchers include the need to implement a formal evaluation of research partnerships, with community members using rigorous methods early on and on a regular basis throughout the life cycle of a project. Geary and colleagues proposed to expand patient and community engagement research by applying the Comprehensive Participatory Planning and Evaluation (CPPE) model. Their project, funded by a PCORI Eugene Washington Capacity Building Award, focused on engagement of rural patients and stakeholders to reduce rural health disparities in 1027656WJNXXX10.1177/01939459211027656Western Journal of Nursing ResearchEditorials editorial2021