Best practice in involving service users and carers in research: Confronting the issues and doing it for real

We aim to tease out the discrepancies between theory and practice when involving service users and carers in research and to make participants discuss the issues behind the reality of “meaningful involvement”. In order to achieve this, we will use our own involvement in collaboration with the local university. We are very aware that we are probably experiencing best practice but also that issues are not quite so clear-cut and that there are potential limitations and barriers to involving users and carers fully. Through a group exercise using an imaginary research project concentrating around designing and undertaking research, we hope to make participants think about the range of practical issues at stake (funding, training, professional support, honorary contracts, CRB checks etc.), about the meaning of involvement for both service users and professionals (making positive use of service users’ research skills, cultural differences, addressing the fears of professionals, etc.) and the question of recruitment (who?, how?). We aim to tackle these issues productively and to generate a positive exchange of views hoping that participants, thinking about their own projects, current or future, will take ideas and solutions back to their groups and teams…. and do it for real!




Patient involvement and research ethics: Experiences from the Macmillan Listening Study

This paper reports the experiences of setting up the Macmillan Listening Study. The study is commissioned and funded by Macmillan Cancer Relief and aims to explore the attitudes people affected by cancer have about cancer research and to identify their research priorities. The study is participatory in design and thus involves cancer patients and carers as co-researchers or advisers throughout the research process.

The paper focuses on a fundamental aspect of the research cycle ? the process of ensuring ethical approval. Multi-Centre Research Ethics Committees, Local Research Ethics Committees and local R&D exert a significant influence over research, ensuring that studies are conducted in a safe and appropriate manner.

Research generates specific ethical challenges when people affected by cancer are involved in developing the study design and delivering the project. These challenges include, the consideration of the psychological and other support needs of co-researchers, ensuring the confidentiality of research information, ensuring co-researchers are not over-committed, and responding to potentially prejudicial views of patients by committees. The paper will therefore raise issues of how to ensure that involving people affected by cancer as co-researchers is ethical, as well as indicating the concerns ethics committees may raise when reviewing studies of this nature.




Undertaking palliative care research: Service users involvement

This paper will discuss a research project being undertaken in palliative care that includes the experience, knowledge and perspectives of service users throughout the research process. This inclusion is achieved via a research User Advisory Group that work with the researcher influencing all stages of the research. The research itself is concerned with the accounts of local men and women with a range of life limiting conditions about what they need and experience from palliative care.

In the current health and political climate user involvement can easily be seen as an unproblematic, must-do activity, and service user involvement in research has followed suit (Beresford, 2002). It has been seen as an approach to counter marginalisation some service user group’s experience (Northway et al, 2001), however ownership and purpose of such projects can be a contentious issue and this research is no exception.

We will question the process of involvement for researcher and service users and concentrate upon how the research has been undertaken and produced. Some of those involved in this research will question how we have worked together on this research and how the service user contribution has influenced the research.




A survivor – led evaluation of a survivor-led service

This workshop will present some information about the evaluation of the Leeds Survivor Led Crisis Service carried out by the team, under the following headings:

Training: a developmental approach was taken to training to take into account the previous experience and skills of all team members;

Mutual support and teamwork: we shall explore the issues we considered in working together and supporting each other in carrying out the evaluation;

Interviewing: we shall explore the ethical issues we discussed about how to interview people (often based on our own experiences of being interviewed), and some of the practical issues that we needed to address.

It is not easy to fit this project into one single theme! But we have chosen to address `undertaking research’ in order to explain what we did and how we did it, as well as enabling workshop members to hear about a survivor-led approach to an evaluation.

With thanks to the Leeds Survivor Led Crisis Service, who funded the evaluation.




Making decisions about how to apply what you’ve found out: Involving people with learning difficulties in a European research project

‘I like, I love’ is a research project that covers 6 European countries, looking for a new resource for people with learning difficulties around sexual health that is useful in all partner countries. This report from the researchers involved in the project will consider the professional involvement of people with learning difficulties. The report will address undertaking and implementing research with people with learning difficulties. Joyce Howarth will talk about the importance of people with learning difficulties being employed on the project. Sally Hillman will give her experience of being a researcher with learning difficulties. Kerrie Ford and Val Williams will talk about meeting all the partners in Mallorca and how Kerrie helped to decide on the way forward.

Issues for discussion will be:

  • The importance and added value of including service users in research about sensitive topics.
  • Methods for including service users in professional, mixed teams of researchers.
  • Doing research in an inclusive way in Europe.



Researching recovery : User involvement in data analysis

The paper will include an outline of the process involved in analysing and interpreting the data in a user led research project on recovery from psychosis. This will involve the explanation of the following stages :

Stage 1 : the process of data analysis by user researchers using Interpretative Phenomenological Analysis (IPA) including reasons for the choice of this method of analysis.

Stage 2 : the role of the Steering Committee and the involvement of service users in the final stages of data analysis using IPA.

Stage 3 : the consultation process with the project participants on the emergent themes from the data analysis.

The issues that we will raise for discussion will be :

  • overcoming problems encountered in this process of data analysis
  • the gains from this process of data analysis
  • potential for extending the involvement of service users in data analysis
  • the wider implications for the involvement of service users in research design and service development.



Patient and carer involvement in NICE clinical guidelines: Building on the good, learning from the not-so-good

From their inception, Guideline Development Groups (GDGs) commissioned by the National Institute for Clinical Excellence (NICE) have included, as a minimum, two patient and/or carer members. This paper presents the findings of a project to evaluate the methods and impact of patient and carer involvement in the first clinical guidelines developed on behalf of NICE.

The aim of the project was to:

  • determine areas of good practice
  • recognise aspects of the process which could be improved
  • identify what impact the patients and carers had on both the process and the products.

The patient and carer members and the Chairs from 20 GDGs were interviewed at the end of the 18 month guideline development process.

This paper will discuss both quantitative and qualitative information from the interviewees’ observations on:

  • their experience of the process as a whole
  • the methods used to develop the guidelines
  • the support and training available
  • the patient/carer members’ interactions with the Chairs and other group members
  • the contributions that the patient/carer members were able to make
  • their views on the final products, including the version of the guideline specifically designed for patients and members of the public

We will be offering some suggestions for successful patient/carer involvement which emerged from this project.




National Evaluation of Sure Start – Involving parents in Sure Start local evaluations. Stories from the field

The National Evaluation of Sure Start (NESS) includes one module that supports the 524 Sure Start Local Programmes to carry out evaluations of their services, looking both at process and outcomes. Many programmes have adopted methodologies that include the training and development of parents to act as evaluators and researchers.

NESS also acts as a repository for Sure Start Local Programmes Annual Reports and invests time in synthesising reports in order to examine how programmes are undertaking evaluation and what they are finding as a result of such efforts. A range of reports has been examined to define the extent that parents have been involved in evaluation practice. This has been supplemented with knowledge from the field gained in NESS support activity to Sure Start Local Programmes. This presentation will provide insight into the results focusing on the degrees of participation by parents, including those parents who have been traditionally hard to engage, in evaluation of services as indicated by reports and other outputs from programmes that adopt this approach. The presentation will also highlight and promote discussion about the benefits of such involvement as well as some barriers to full inclusion in the research process.

Sure Start is committed to involving parents in all aspects of programme delivery and decision-making. Participation in Evaluation is one further positive contribution to the ethos inclusivity promoted by the Sure Start Unit at the Dfes.