How might patient involvement in healthcare quality improvement efforts work—A realist literature review
ORIGINAL RESEARCH PAPER
Bergerum, C., Thor, J., Josefsson, K., and Wolmesjö, M. (2019)
This realist literature review, regarding active patient involvement in healthcare quality improvement (QI), seeks to identify possible mechanisms that contribute to success or failure. Furthermore, the paper outlines key considerations for organizing and supporting patient involvement in healthcare QI efforts.
Two literature searches were performed. Altogether, 1204 articles from a healthcare context were screened, focusing on improvement efforts that involve patients, healthcare professionals and/or managers and leaders. Among these, 107 articles fulfilled the chosen study selection criteria and were further analysed. Eighteen articles underwent a full realist review. In the realist synthesis, context‐mechanism‐outcome configurations were articulated as middle‐range theories and organized thematically to generate a program theory on how active patient involvement in QI efforts might work.
The articles exhibited a diversity of patient involvement approaches at different levels of healthcare organizations. To be successful, organizations’ support of QI efforts that actively involved patients tailored the QI efforts to their context to achieve the desired outcomes, and involved the relevant microsystem members. Furthermore, it promoted interaction and partnership within the microsystem, and supported the behavioural change that follows.
This realist synthesis generates a program theory for active patient involvement in QI efforts; active patient involvement can be a tool (resource), if tailored for interaction and partnership (reasoning), that leads to behaviour change (outcome) within healthcare QI efforts. The theory explains essential resource and reasoning mechanisms, and outcomes that together form guidance for healthcare organizations when managing active patient involvement in QI efforts.
Co‐producing research with youth: The NeurOx young people’s advisory group model
SPECIAL ISSUE PAPER
The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people’s perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers’. Young people’s advisory groups (YPAGs) are a widely used method to enable young people’s involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups.
In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People’s Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact.
We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research.
Adopting a critical and reflective attitude can increase researchers’ capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience’s needs and priorities.
Keywords: bioethics, children’s rights, co-production, involvement, mental health, participation, public engagement, young people, young persons’ advisory group.
‘You’ve come to children that are in care and given us the opportunity to get our voices heard’: The journey of looked after children and researchers in developing a Patient and Public Involvement group
Alderson, H., Brown, R., Smart, D., Lingam, R. and Dovey-Pearce, G. (2019)
Looked after children and care leavers (denoted as LAC) are often described as a ‘hard to reach’ group of young people, and their voices are rarely sought to inform academic research.
This paper reports on experiences and reflections of a group of children and young people and academic researchers who developed a Patient and Public Involvement (PPI) group that was set up in the context of an ongoing health service intervention trial with LAC.
Eighteen qualitative semi‐structured interviews were conducted with seven LAC, the participation officer within a North East Children in Care Council and the four researchers involved in developing and facilitating the PPI group. PPI sessions (n = 9) each approximately 1 hour in length were conducted over an 18‐month period.
The qualitative interviews were transcribed verbatim. Thematic analysis was used to analyse the data, and direct quotes are used within the paper.
The LAC used the PPI group to produce a 5‐minute video to highlight why they think young people should be involved in research. Overall findings suggested that it was feasible to develop a research‐related PPI group with LAC. Findings from the research were used to co‐develop ‘top tips’ of working with vulnerable young people such as looked after children.
This paper has shown that PPI with LAC can be done if a co‐production approach to research is taken. It also suggests that assumptions regarding the capabilities of young people as researchers need to be re‐evaluated.
Keywords: looked after children, patient and public involvement, qualitative research
‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research
Staley, K., Cockroft, E., Shelley, A. and Liabo, K. (2019)
For patients and the public to work collaboratively with researchers, they need support and opportunities to engage in learning that builds on their skills and grows their confidence. In this article, we argue for a different approach to this learning, which starts with the expertise patients/ the public arrive with, and helps them identify and develop the soft skills required to influence researchers effectively. Much of the current training for patients and the public focuses on addressing the gaps in their knowledge and awareness about how research works and how public involvement adds value. Our training complements this by exploring the concept of ‘experiential knowledge’ in more depth. Patients and the public possess experiential knowledge (knowledge gained through lived experience) that researchers may not have. In the training we explore the nature of this expertise and other skills that patients/ the public bring, as well as how to identify who has the most relevant experiential knowledge in any given situation, and how best to share experiential knowledge to benefit researchers and maximise the impact of involvement. We co-produced this training with a patient member of the project team, and through feedback from patients and carers in an initial pilot. Our approach adds another dimension to preparing people for involvement and in particular for taking part in conversations with researchers that support mutual learning. We suggest this approach should be supported by separate, mirror training for researchers, that also develops their soft skills in preparation for learning from involvement.
Keywords: public involvement, training, patient involvement