Authors: Lockey R, Sitzia J, Gillingham T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G, Sigrist J.

This report presents the findings from the TRUE project, a research study commissioned by INVOLVE. The purpose of the project was to explore the provision of training to support the active involvement in research of the public and users of NHS, public health and social care services. The project was carried out over 15 months in 2002-03 by a collaborative team including seven people who use mental health services.

A summary report is also available.

No. of pages: 163 pages

Author: Alison Faulkner

The TRUE (Training in research for service users: evaluation) project was commissioned by INVOLVE to carry out research to scope training provision in the UK relevant to consumer involvement in research, to identify what elements are effective, and to develop a good practice guide. The project was a three-way collaboration between Worthing & Southlands Hospitals NHS Trust, CAPITAL (Clients and Professionals in Training and Learning, a mental health service user organisation), and the University of Brighton.

No. of pages: 27

The Alzheimer’s Society Quality Research in Dementia (QRD) award-winning research grants programme involves consumers in all stages of the Research Cycle.

Today a small group of QRD members, in emphasising the Identifying & Prioritising part of The Research Cycle, will demonstrate how the 150 strong UK networks of carers and former carers of people with dementia achieve this.

We will look at the impact this has on the commissioning, design and management processes; address training issues; the perception of the network by researchers and, finally, how the QRD consumer members themselves feel they really are Making a Difference.

How the Alzheimer’s Society QRD Consumer network do it!

Development of a local Cancer Network Consumer Research Panel started in April 2002. The aim of the panel was to support and train consumers to be involved in cancer research at all stages of the research process. This paper presents the findings of an independent evaluation of the panel undertaken by the University of Sheffield. The aim of the evaluation was to explore the expectations of the Consumer Research Panel from the perspectives of the consumer panel members, the panel facilitators and the commissioners of the panel and to evaluate the extent to which these expectations have been met.

Mixed methods were used including questionnaires to panel members, focus groups with panel members and semi-structured interviews with the panel facilitators and a member of the Cancer Network Project Board. A consistent theme identified was facilitators and consumers’ interest in consumers being able to influence the research agenda and priorities for cancer research. How far consumers have been able to achieve this and their other expectations will be discussed, expectations of the different stakeholders will be compared and recommendations will be made for setting up and maintaining consumer research panels in the future.

This paper is part of an evaluation undertaken into the attempt by the Trust to set up a structure to promote and commission user-led research. I propose to start by providing an introduction to the sort of research which we are hoping to undertake and then show how we established a Panel of users and experts and how this led into initiating research. The main focus will be on our evolving structures and systems that included consideration of the use of an external academic to assess and score proposals and on how abstract considerations and concerns about politics, along with funding issues can get in the way of real research. Issues of interest for discussion will include to what extent the Trust should influence projects in terms of such things as asserting quality when this may conflict with users’ wishes.

The paper documents the process of involving users in the development of a research bid. This bid was developed by a collaboration between the Warwickshire National Childbirth Trust Pre-term Support Group, the National Childbirth Trust, Bliss, the premature baby charity and the Royal College of Nursing Institute. The Warwickshire National Childbirth Trust Pre-term Support Group had significant influence on the study aims, the focus, methods and ethical considerations. As far as possible, a partnership or collaborative model of working was adopted in developing the bid. This was enabled by a number of factors, such as personal commitment of those involved, good working relationships, honesty, core funding for the lead researcher who worked on the bid and the existence of a responsive funding source. A number of key barriers were also identified, which may hinder future researchers and users, such as the lack of funding at this key point in the research process and recognising the time-consuming nature of collaboration. While user involvement in bid development can be instrumental in ensuring the relevance of research, in reality a collaborative approach is difficult to achieve, unless specific support and funding can be found. These barriers need to recognised by commissioning bodies.

A presentation and explanation of the Maternity Alliance’s User Representation Recruitment and Evaluation Tools, designed to help organisations to recruit consumers/users/lay representatives to steering/working groups and committees. These representatives add great value to research projects. However, our experience told us that insufficient research by an organisation leads to he wrong representatives, and tokenism, on projects. Proper consideration of recruitment should take place early in the research cycle, and good recruitment will resonate throughout the cycle.

The first tool is a detailed questionnaire designed to identify exactly what an organisation is looking for in a representative, and how that representative is expected to help their research.

The second tool provides the lay representative with the chance to record their experiences after their involvement with the organisation has ended. This helps to judge the overall success of a project.

The tool was piloted in 2002 to an enthusiastic response.

The presentation will explain the rationale behind, and development of, the Tools. The format of the Tools, and the results of the pilot will be discussed.

Issues for Discussion:

– the value of lay representatives

– the problem of poor recruitment of lay representatives

– the wide application of our Tools for organisations involved in research

This presentation will describe a support programme for consumer involvement in research and consider its value by comparing it with other learning models. It will focus on the conference theme of ‘designing and managing’ learning programmes for consumer involvement.

In this presentation we shall explain the vision that gave rise to the development of a learning programme to support user-involvement in eleven very diverse research projects in Primary Care in the London Region. We shall discuss the models for learning programmes that were used, and their advantages and disadvantages for meeting the initial aims of the project in a climate of continual change and complex partnerships. Finally, we shall use the comparative framework to explore a range of learning models for maximising learning and sharing in the context of change and diversity. Our presentation will take us through the team’s experiences of methods including interactive workshops, open ‘surgeries’ to individual support, educational resources, action learning sets and learning networks.