Evaluating the impact of service user involvement on research: a prospective case study

Abstract

As service user involvement in health and social care research has become more firmly embedded in health policies, both in the UK and internationally, there is increasing interest in evaluating its potential benefits and outcomes. Impact studies have highlighted a range of different types of service user involvement, using diverse research methods, within various research topics and involving different stakeholders. Potential benefits to research, researchers and the service users actively involved in research have been identified, along with the possibility of some negative consequences. Many impact studies have been criticized for being based on informal retrospective accounts of researchers and service users working together. Few have been underpinned by conceptual models, and there is a paucity of detailed accounts of the process of involvement that would enable replication. This paper reports an account of a prospective, qualitative exploration of service user involvement within a study, where the aims of the evaluation were agreed beforehand. Reflective discussions about the process and progress of service user involvement at different stages of the study were recorded, transcribed and analysed. The qualitative analysis identified perceived benefits to research, researchers and service user researchers that endorsed previous findings. The analysis also highlighted subjective and interpersonal aspects of service user involvement that have seldom been reported. This evaluation demonstrates the benefits of allowing time for structured reflection and adds to the understanding of the process and meaning of service user involvement in research.

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

“…[88][89][90] Dissemination of research findings is also reported as gaining from PPI networks to increase access to peers 81 and relevant sections of the community, 15 and making information more broadly readable. 31,72 There are fewer published claims for PPI as playing a significant role in implementing findings, but, in a US public health research programme, Krieger et al 86 report PPI-related implementation of changes by increasing their cultural relevance. Several researchers have identified that PPI has helped them address ethical dilemmas, 17,71,78,85,91 for example ethically appropriate ways of contacting women with recently diagnosed breast cancer and the use of routine patient data.…”

“…30 Not only is there a notable lack of evidence on outcomes and impact of PPI, 31 but what little there is tends to be observational evaluations which rarely consider the links between the context (when and where PPI happens), models of PPI (how it functions) and the outcomes of PPI (what difference it made). 32 As outlined in the next section, the RAPPORT study aimed to address these significant gaps in the evidence.…”

“…19,29,31,32,159 While fairly limited in the amount of evidence this would elicit about the benefits of PPI in research, the survey included an open question where respondents could write about at which stage they felt PPI had the most impact. The most frequent type of answer given was 'the design stage/at the beginning/as early as possible'.…”

From ‘other’ to involved: user involvement in research: an emerging paradigm

“…The full range of approaches to user involvement in research from the most limited to usercontrolled research must be supported and included for evaluation. There is now significant interest in the UK in the 'impact' that user involvement in research has; that is its influence and effects (Staley 2009;Barber et al 2011). There are many dimensions to explore when considering the impact that user involvement in research may have; on the nature and quality of the research; on researchers and research funders and on the influence that the research has on policy and practice.…”

Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research

“…An integral part of POR is to include people with personal experience of a condition (generally referred to as "patients") and their caregivers as partners throughout the entire research life cycle. 23 This process includes involving patients in developing research priorities to ensure that public funds are allocated to projects that are viewed as useful, meaningful, and important by those who will be most impacted by their results. 24,25 The James Lind Alliance (JLA) has developed a process referred to as a priority-setting partnership, which is designed to bring together clinicians and patients to identify treatment uncertainties or important questions about the treatment of health conditions that are not answered by current research.…”