Partnering with frail or seriously ill patients in research: a systematic review

Abstract

Background The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle. Methods A systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted. Results Of 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients’ priorities. Conclusions There is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process. Systematic review registration The systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

“…For example, the location for engagement activities needed to be accessible to those with mobility challenges or for those facing transportation barriers. 24 We used web-based communication platforms, e.g. Zoom, WebEx, as an alternative strategy when in-person meetings were not possible.…”

“…This is consistent with the literature that emphasizes the importance of building trusting relationships between patients and researchers, regardless of the length, type, or intensity of their engagement. 11 , 24 , 41 , 42 Building these relationships took time, and opportunities for patient partners to contribute to the research were provided throughout the lifecycle of our projects.…”

“… 5 , 23 Older adults with multimorbidity are a diverse group of patients, ranging from relatively healthy, independent living individuals to very frail individuals with poor physical functioning and cognitive problems, which often can make engagement in research challenging. 5 , 24 The evidence base to support engagement of populations similar to older adults with multimorbidity in healthcare research is sparce. 24 Published reviews on patient engagement in research in the general population conclude that while engagement is feasible, more research is needed to understand exactly how and when to optimally engage patients.…”

“… 5 , 24 The evidence base to support engagement of populations similar to older adults with multimorbidity in healthcare research is sparce. 24 Published reviews on patient engagement in research in the general population conclude that while engagement is feasible, more research is needed to understand exactly how and when to optimally engage patients. 8 , 25 , 26 Funders, such as INVOLVE, PCORI and SPOR have highlighted the need to more clearly develop strategies to promote meaningful engagement and develop methods for evaluating the implementation and impact of patient engagement on research outcomes.…”

“… 27 The vulnerability of older adults with multimorbidity provides additional complexity to the engagement process, and practical issues that often deter researchers from involving similar populations in the research. 24 …”