Who should I involve in my research and why? Patients, carers or the public?

Abstract

Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.Clarity about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. While it is often understood to have a moral purpose, or to improve research quality, this doesn’t always identify who needs to be involved. When learning is understood to be the purpose of involvement, then the most appropriate people to involve are those with relevant experiential knowledge. In research projects, these are people with lived experience of the topic being investigated. This could be patients, carers, members of the public or health professionals.In this article we discuss how involving people who do not have the relevant experiential ‘lived’ knowledge may contribute to ineffective or tokenistic involvement. These people are as likely as researchers to make assumptions, risking missing key insights or resulting in outcomes that are off-putting or even harmful to research participants.We conclude that greater attention needs to be given to the question of who to involve. Raising awareness of the significance of experiential knowledge and the contextual factors that determine whose input will be most useful will help everyone to understand their roles and improve the quality of involvement. It will help to maximise the opportunities for learning, increasing the likelihood of impact, and helping to achieve the ultimate goal of improved health and services.

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

“…The aim of the PPI advisor contributions within the trial was to enable valuable insights from the perspective of a stroke survivor or carer during the complete research cycle, from designing the study to the implementation of findings, evaluation and dissemination phases of the research journey for the MoTaStim-Foot feasibility study, adding value and making the study more relevant and credible. Our PPI advisors were carefully selected from a pool of people expressing an interest in informing our research, and were able to contribute effectively to the research process because they are experts in the area of stroke, gained from their lived experiences [ 19 ].…”

Enabling Transdisciplinary Collaboration: Stakeholder Views on Working With “Children With Mentally Ill Parents” Research Groups

“…This in turn requires to respect and appreciate heterogeneous backgrounds, different perspectives, professional trainings, and skills that all eventually enrich the discussions and collaborations ( 19 , 44 , 45 ). It therefore is important to carefully reflect on the who and why of involving people with lived experience so that ineffectiveness, tensions, and tokenistic involvement of stakeholders can be avoided ( 38 ).…”

“…Based on our results, it becomes evident that successful, transdisciplinary collaboration demands specific personality characteristics ( 44 ), organizational and financial support structures ( 45 ) and highly depends on the peoples' attitudes and values toward PPI ( 37 , 39 , 41 , 43 , 52 ). Understanding the situational context and the people and the community in which the collaboration takes place ( 36 – 38 ), is crucial; especially for solving complex challenges where multiple stakeholders are involved, such as designing interventions for COPMIs and their families ( 14 – 18 ). Our findings therefore contribute to implementation strategies, in which COPMIs have a key role in recruiting and training researchers with a positive attitude toward PPI and transdisciplinary collaboration, and in identifying tensions in the transdisciplinary collaborations.…”

“…To counteract this criticism and ultimately to avoid tokenistic involvement of stakeholders in research, it is therefore crucial to determine “why” and “who” should be involved at all in research and to acknowledge the experiential knowledge that stakeholders bring to the table. In doing so, active involvement of stakeholders in research may ultimately maximize the opportunities of learning, increase the likelihood of impact, and help to achieve the goal of improved services to the affected community ( 38 ).…”

Patient and public involvement in randomised clinical trials: a mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators

“…However, researchers have sought increased clarity about funders’ expectations regarding PPI and guidance on its delivery [ 8 , 10 , 11 ]. The NIHR organisation INVOLVE produced guidance on PPI for researchers in 2012 [ 12 ], but ongoing problems with implementing PPI have been reported.…”