What are the impacts of user involvement in health and social care research and how can they be measured?

People who use health and social care services can provide different perspectives on research from those of clinicians, policy makers and academic researchers. Involving service users in research is now a priority for government policy and is required by many organisations that fund research. User involvement (UI) can occur at all stages of research, including: identifying and prioritising research questions, designing and conducting research, considering the implications of findings for services and ensuring results influence practice and future research (Chalmers, 1995; Hanley, et. al. 2004). However, whilst there is considerable support in the research community some people argue that its impacts are limited or difficult to identify. Commentators have also argued that the involvement of service users in research can be associated with problems of representativeness, bias, quality and increased cost. There is also evidence from other fields that getting involved in official decision-making processes can have negative impacts on service users(Langston et al, 2005; O?Donnell & Entwistle, 2004; Ziersch & Baum, 2004). Robust methods to assess the impact of UI in research are therefore needed. This project aims to develop and test methods for doing this.

The project will review existing literature to describe different perspectives on the value of UI in research and identify what is already known about the impacts it can have. For example, involving service users in research could result in the outcomes that are measured being more relevant to patients, and help people develop new skills. We will also try to identify factors that seem to be causally linked to these impacts (for example, whether service users were asked which outcomes they valued) and ways in which these impacts have been measured and/or assessed in the past. We will then conduct a survey of funders of research, researchers and service users to explore in more depth areas of consensus and conflicts about the value of UI in research compared to other research values (for example, value for money) and consider how conflicts between values might be managed. We will then use all this information to develop guidance on how to assess the impact of UI in research and test this in a small number of pilot studies. The project will also produce standards against which approaches to user involvement in research can be assessed to help researchers maximise positive impacts of UI in research and avoid adverse effects.

This research aims to advance understanding of the impact of user involvement (UI) in health and social care research and contribute to more robust approaches to the measurement of these impacts and to the development of evidence standards against which practice in UI can be assessed. Building on recent literature reviews our objectives will be to:
? Produce a framework identifying impacts of UI in research and factors associated with these;
? Identify different perspectives on the value of UI in research in relation to other values, explore areas of consensus and conflict and consider ways in which conflicts might be managed;
? On the basis of the above to develop and test guidance on the assessment and/or measurement of impacts and standards for assessing good practice.
The study design consists of five phases of work. During Phase 1 we will collate evidence, including recent systematic reviews, on (i) models of UI in research, impacts and factors associated with these; (ii) values and normative debates about UI in research; and (iii) evaluative approaches including specific tools and techniques for measurement and assessment of impacts. Phase 2 will consist of an adapted Delphi process that will consider the nature and extent of consensus and conflict around the value of UI in health and social care research and explore whether and how conflicts could be accommodated in policy/practice. The third phase of work will involve the development of a User Involvement Impact Assessment Framework (UI-IAF) and associated guidance on its use in different settings; piloting this in the context of existing research activity in three settings (priority setting; funding allocation; and research projects); and in light of these pilots, refinement of guidance and UI-IAF. A fourth phase of work will draw on the earlier phases to produce a report on standards for good practice in UI focusing on how positive impacts of UI in health and social care research might be maximised and adverse effects/negative impacts avoided. During the fifith and final phase we will consult with a wider group of stakeholders on the outputs of the research at a large deliberative event. The three main outputs ? a report on contemporary normative debates about UI in research, standards for good practice in UI and Guidance on the Assessment and Measurement of UI Impacts - will be revised in light of these discussions and plans for dissemination will be produced.