Users' and researchers' construction of equity in research collaboration

Abstract

Background Equity is described as an ideal in user involvement in research and is mentioned in the health service literature and in several guidelines. However, equity is described as being difficult to obtain and the concept is rarely clarified or concretized. Equity can be socially constructed. Objective This study explored users' and researchers' constructions of equity in research processes. Design and Method The study had a qualitative research design. Constructions of equity were analysed through the lens of positioning theory. Two focus group interviews consisting of both users and researchers were conducted. Findings The thirteen users and four researchers considered ‘equity’ as an important part of user involvement in research. Storylines about norms, responsibility, language, knowledge and usefulness evolved in the discussions. These storylines elucidated unequal access to rights and duties. Discussion and conclusion Users and researchers constructed equity in user involvement differently, but the difference was masked by an apparent agreement. Users and researchers drew on different storylines. The researchers emphasized the scientific discourse and although users acknowledged this discourse, they attempted to oppose this dominant discourse by drawing on a lay discourse. The identified constructions and negotiations of equity may contribute in new understandings of an equal collaboration in user involvement in research.

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

“…The study populations from the empirical papers were patients with cancer (n = 8) [ 15 , 27 – 29 , 45 , 51 , 59 ], mental health illness (n = 8) [ 34 , 35 , 39 , 42 , 46 , 49 , 50 , 61 ], cardiovascular disease (n = 2) [ 24 , 54 ], kidney failure (n = 1) [ 52 ], traumatic brain injury (n = 1) [ 38 ], reproductive dysfunction (n = 1) [ 30 ], women with prior gestational diabetes mellitus (n = 1) [ 43 ], older adults and geriatric disorders (n = 7) [ 25 , 26 , 36 , 40 , 47 , 56 , 57 ], stroke (n = 2) [ 53 , 55 ], ankylosing spondylitis (n = 1) [ 44 ], persons living with diabetes (n = 1) [ 60 ], and patients with rehabilitation needs (n = 2) [ 31 , 48 ]. In four studies, no specific disease population was described [ 32 , 37 , 41 , 58 ]. In 21 studies, solely patients were involved [ 27 , 29 , 30 , 34 , 35 , 39 , 40 , 44 , 45 , 47 , 48 , 51 , 52 , 55 – 57 , 61 – 65 ], six studies involved public [ 32 , 36 , 38 , 42 , 46 , 58 ], 19 studies involved a combinatio...…”

Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

“…'Equity' has been a key concern underpinning approaches to PPI in health research. 9 PPI has the potential to empower individuals and communities to have a significant role in shaping health and social care research. For example, participatory research has sought to redress power imbalances for indigenous minority populations.…”

“…15 Patients' capacity for involvement may vary, and projects have resource limitations. 9 Given these considerations, how can patients be meaningfully involved as analysts to enhance scientific value? We sought to involve patients as analysts for our process evaluation of the Improving the Safety and Continuity Of Medicines management at care Transitions (ISCOMAT) cluster randomised control trial.…”

“…'Equity' has been a key concern underpinning approaches to PPI in health research 9 . PPI has the potential to empower individuals and communities to have a significant role in shaping health and social care research.…”

“…Patients’ capacity for involvement may vary, and projects have resource limitations 9 . Given these considerations, how can patients be meaningfully involved as analysts to enhance scientific value?…”