Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement

Abstract

Background There is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders as research partners in study planning, conduct, and dissemination. This requirement, unique among large healthcare research funders in the US, provides an opportunity to learn about challenges encountered and specific strategies used by PCORI-funded study teams. The primary objective of this study is to describe -- from the perspective of PCORI investigators and research partners—the most common engagement challenges encountered in the first two years of the projects and promising strategies to prevent and overcome these challenges. Methods Descriptive information about investigators, partners, and their engagement was collected from investigators via annual (N = 235) and mid-year (N = 40) project progress reporting to PCORI, and from their partners (N = 260) via voluntary survey. Qualitative data were analyzed using content and thematic analyses. Results Investigators and partners most often described engagement challenges in three domains: (1) infrastructure to support engagement, (2) building relationships, and (3) maintaining relationships. Infrastructure challenges related to financial and human resources, including funding support and dedicated staff, identifying diverse groups of partners, and partners’ logistical needs. Challenges for both building and maintaining relationships encompass a variety of aspects of authentic, positive interactions that facilitate mutual understanding, full participation, and genuine influence on the projects. Strategies to prevent or mitigate engagement challenges also corresponded overall to the same three domains. Both groups typically described strategies more generally, with applicability to a range of challenges rather than specific actions to address only particular challenges. Conclusion Meaningful engagement of patients and other stakeholders comes with challenges, as does any innovation in the research process. The challenges and promising practices identified by these investigators and partners, related to engagement infrastructure and the building and maintenance of relationships, reveal actionable areas to improve engagement, including organizational policies and resources, training, new engagement models, and supporting engagement by viewing it as an investment in research uptake and impact.

Rapid prioritisation of topics for rapid evaluation: the case of innovations in adult social care and social work

“…Achieving buy-in was potentially a challenge. This is consistent with previous research which has highlighted the challenges of engagement [ 28 ]. JLA PSPs that focus on single healthcare conditions can engage with established patient and clinician communities who have common experiences, knowledge, terminology and a clear understanding of their clinical area (e.g.…”

Co-destruction in social care services: how to identify and evaluate barriers arising from a co- production exercise with family carers living in rural and remote areas

“…System System Lack of resources [1,26] Misuse of resources [15] Overuse/underuse of resources [15] Lack of time [33,35,42] Lack of transparency [24,40,42] Damage interpersonal relationship [26] Lack of funding [41] Unreliable and unsatisfied results [31] Complexity of the network [20] Additional costs & effort [31] Initiatives' project related [1,28] Lack of inclusion of marginalized citizens [23,45] Does not clarify expectations [1,40,41] Does not clarify roles [1,22] Does not clarify purpose of involvement [22] Mobility issues [20,23,33,35,40,45] Although the list of barriers of co-production in the health and social care literature seems quite well explored, few attempts in the literature have explained how to individuate and interpret these barriers [1]. Barriers to co-production are usually reported in broad terms [46] without highlighting the process by which negative effects are achieved. Moreover, almost all of these barriers have been identi ed by researchers without collecting citizens' perspectives [46].…”

“…Barriers to co-production are usually reported in broad terms [46] without highlighting the process by which negative effects are achieved. Moreover, almost all of these barriers have been identi ed by researchers without collecting citizens' perspectives [46].…”

Integrating Patient-Centred Research in the Canadian Cancer Trials Group

“…Establishing partnerships with patients to engage them in all levels of development and execution of clinical trials (CTs) is increasingly being explored and applied globally [ 1 , 2 , 3 , 4 , 5 , 6 ]. Including the patient perspective when designing research studies or setting the research agenda is new to the Canadian research landscape compared to frameworks such as the Patient-Centered Outcomes Research Institute (PCORI) and the Clinical Trials Transformation Initiative (CTTI) in the US or INVOLVE (UK national advisory group) in the UK [ 7 , 8 , 9 ].…”