User-controlled research

Introduction

User controlled research is the most developed point along a continuum of user or public involvement in research. User controlled research is usually taken to mean research that is actively initiated, controlled, directed and managed by service users and their organisations, exploring subjects and questions that concern them. The focus of this scoping review is user controlled research in social care. Growing interest in, and application of, this research approach highlights the timeliness of such a review.

Objectives

The review aimed to look at the characteristics, strengths and limitations of such research, explore its theory and use examples to illuminate its policy and practice. Social care is concerned with meeting the support needs of a wide range of people, including disabled people, mental health service users, older people and people with learning disabilities. Insights from user controlled research may improve understanding of social care – how it is offered and also how needs for social care support may be reduced.

Methods

The review explored the following in relation to user controlled research in social care:

• meanings and conceptualization;
• origins and history;
• principles, policy and practice;
• research methods;
• current examples;
• gaps;
• strengths and benefits;
• challenges; and
• next steps for the future.

Findings

The review highlighted that there are many different ways of undertaking user controlled research, in terms of where it is located, who is involved, at what stages there is user involvement, how research is controlled and what research methods and approaches are adopted.

It also highlighted challenges for user controlled research for the future, building on what is now known currently. While user controlled research has made enormous progress over a short time, establishing itself as a new and valued research approach, making its mark on research discussions and structures, as well as resulting in a growing number and range of research projects and developing qualitative and quantitative research methods, its position is not secure. It also noted the importance of working to safeguard the sustainability of user
controlled research for the future.

The review set out a series of important active steps that need to be taken:

• Strengthening the theoretical base of user controlled research
• Investing in education and training
• Improving welfare benefit policies to allow for people to be engaged in research
• Providing funding for user controlled research
• Carrying out a systematic and comprehensive evaluation of user controlled research
• Addressing diversity
• Fostering user controlled organisations
• Including user controlled research in research structures
• Building alliances and sharing knowledge
• Addressing the issue of control and liberating research relationships
• Acknowledging and challenging structural constraints.