Patient representatives: Crucial members of health‐care working groups facing an uncertain role and conflicting expectations. A qualitative study

Abstract

Background Patient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. Objective To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. Design Qualitative design using semi‐structured interviews analysed by content analysis. Setting and participants Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. Results Most participants considered the PR role important but mentioned several problems. PRs’ contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. Conclusion This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. Patient or public contribution PRs were information givers in data collection.

Patient Experience Coordinator

“…The pandemic resulted in lower scores in patient experience across many care settings. 3 This pilot study provides promising information that should be further explored regarding the impact of the Experience Coordinator and the benefit of this role from the perspective of the nurse.…”

“…2 Patient representatives are individuals responsible for guiding patients and families through the healthcare system and/or treatment course. 2,3 The new role was not designed like the more traditional patient representative or patient advocate roles, which often mediate between patients, families, and the clinical team. The traditional roles such as these tend to balance their job listening and responding to patient concerns about the clinical care or care team, which may create an unwelcoming relationship with the clinical team.…”

“…In the health system, all healthcare personnel should be considered patient advocates and bear responsibility for advocating or “speaking up” for patients 2 . Patient representatives are individuals responsible for guiding patients and families through the healthcare system and/or treatment course 2,3 . The new role was not designed like the more traditional patient representative or patient advocate roles, which often mediate between patients, families, and the clinical team.…”

Nothing about me without me: GRACE‐fully partnering with patients to derive clinical practice guidelines

“…Patient representatives on health care working groups often perceive conflicting expectations fueled by unclear or mixed messaging. For example, qualitative research of patient representatives implies that those without medical training or the ability to cite research perceive less respect or capacity to communicate ideas, yet few organizations provide a liaison resource to assist patients to interpret the research upon which CPGs are being derived 8 . In addition, culturally sensitive frameworks that accommodate language, values, and geography are often neglected when engaging patients 9 .…”

“…For example, qualitative research of patient representatives implies that those without medical training or the ability to cite research perceive less respect or capacity to communicate ideas, yet few organizations provide a liaison resource to assist patients to interpret the research upon which CPGs are being derived. 8 In addition, culturally sensitive frameworks that accommodate language, values, and geography are often neglected when engaging patients. 9 The theoretical underpinnings of meaningful patient engagement are to ensure plain language communication and a CPG chair who is invested in diversity and patient-centeredness.…”