Title: User Controlled Research: Its Meanings and Potential
Authors: Michael Turner and Peter Beresford
Affiliations: Shaping Our Lives and the Centre for Citizen Participation, Brunel University
Title: Making User Involvement Work: Supporting Service User Networking and Knowledge
Authors: Fran Branfield and Peter Beresford
Affiliations: Joseph Rowntree Foundation
Title: Research as Empowerment?
Author: Bec Hanley
Affiliations: Report of a series of seminars organised by the Toronto Group, Joseph Rowntree Foundation
The terms user involvement, engagement, co-option and consultation are often used interchangeably, but may refer to different things. More recently ideas of services – or research – being user-controlled have also been added, and the latest term to gain currency is that of “co-production” with service users and carers. It is important to deconstruct some of this terminology in order to better understand what is, and more importantly sometimes, what is not actually taking place.
FINDINGS AND ANALYSIS
How to involve service users is a question which challenges many commissioners and providers of health and social care services. While it is increasingly recognised that good practice demands involvement of service users, there is often much less clarity about what is meant by this term and how it can be realised in practice. Over the past 10 years or so a considerable body of research evidence has accumulated – including the studies identified above – which illuminates such questions.
Facilitating user involvement requires attention to basic questions of access (such as physical access to a building, and provision of information in a range of appropriate formats). However, there are also wider implications such as for support and training to enable service users to participate, and various outreach work to engage people in groups that might not otherwise be involved. Work supported by the Joseph Rowntree Foundation (including evaluation of the National User Involvement project) has been in progress for at least 10 years.
User involvement can be conceptualised as a continuum. At one extreme is the type of “involvement” which is often seen as tokenism when a few service users might be asked to comment on or react to an agenda, project or document which has already been developed. Inviting service users to join committees, respond to consultations and fill in questionnaires are activities which typify such involvement. The other end of the continuum is characterised by a different approach and ideology in which clients’ expertise and knowledge is valued and an alternative discourse is recognised where service users may be involved in their own organisations in which they support each other and promote their shared agenda. The development of personalisation in social care, particularly through the roll-out of individualised budgets, has been argued for and supported by many service users. The expansion of this model could greatly accelerate user-directed and supported organisations particularly in the development of brokerage and advocacy, while service users and carers will be more directly involved in the “co-production” of their welfare through direct control over the resources to enable them to live their lives.
Much of the recent work on user involvement has been undertaken by the national user organisation and network, Shaping Our Lives. A key objective of the organisation is to increase “the say and involvement that long-term health and social care service users have over their lives and the support and services that they receive”. The service user movement began to emerge in the 1970s, and many people have become increasingly disenchanted with getting involved in “participation” when there is no apparent resulting change or improvement in services.
It is not only service planning, commissioning and provision in which user involvement has come under scrutiny. The approach of research in these areas has also been challenged. Just as with social services authorities taking a range of approaches to involving service users, social care research can either “consult” service users (to a lesser or greater extent) or research can be genuinely user-controlled.
Work by Michael Turner and Peter Beresford explored the definition, nature and operation of user-controlled research. User-controlled research, they argue, has its origins in “service users’ dissatisfaction with traditional research, which many feel has disempowered them”. It is usually distinguished from “participatory” research, and reflects a different research philosophy. Service users “generally see a significant difference, therefore, between user-controlled research and user involvement in research”. The essence of user-controlled research is that control of the research does not reside in the hands of non-service users. The phrase “user-led research” is sometimes used but can be too vague to indicate whether the research is genuinely controlled by service users.
Turner and Beresford identify the aims of user-controlled research in these terms:
● The empowerment of service users and the improvement of their lives (both through the process and purpose of research).
● Being part of a broader process of making social and political change.
● Greater equality in the relations of research production (where the people who carry out the research and those who are the subject of the research relate to each other on more equal terms).
● Being based on the social model of understanding and interpretation (that is, derived from the social model of disability).
An underlying belief is that academic research will tend to distort the experience of service users and disabled people.
There are barriers to user-controlled research, not least the understanding of the scientific research community about what constitutes rigour and objectivity. Traditional research – of the type that is published in peer-reviewed journals, for example – will be subject to evaluation criteria which may be inappropriate for user-controlled research. Seminars organised by the Toronto Group explored issues including:
● Involving service users in traditional or mainstream research.
● Involving service users in peer review.
● Involving ethnic minorities in research.
● Emancipatory research.
The Toronto Group identified some unresolved issues such as whether all health and social care research should be participatory and whether user-led research is necessarily more empowering for other service users.
A common finding in much of the research about barriers to involvement is that user-controlled research and user involvement tends not to be adequately resourced or not addressed as part of mainstream research programmes. A further oft-identified barrier concerns the definition of evidence, as the Toronto Group report comments “to date, very few emancipatory research projects have been funded and even fewer have received large amounts of funding. Service users and ex-service users who undertake research find it hard to be taken seriously as researchersThere is also a danger that, as more service users become researchers, emancipatory research can exclude the very people it was meant to support as it becomes more professionalised”. The Toronto Group defines “emancipatory research” as that which is controlled by and accountable to service users it reflects the experiences and concerns of service users it seeks to empower those involved, and there is access to a wider community network to share experience and develop practice.
A project led by Shaping Our Lives on making service user involvement work offers an example of user-controlled research. Key findings from the work include:
● The importance of being able to network as individuals and in user-controlled organisations. This can improve quality of life at an individual level, but also provides a more effective voice.
● Recognising the value of service user knowledge from people who are experts in their own experience.
Successful networking and the development, sharing and mainstreaming of service user knowledge were recognised to be closely interrelated. Improving the impact of user knowledge on people’s lives was seen to be contingent on strengthening service user networking, and promoting effective user involvement. Improving the networks between service users also highlights the importance of addressing diversity and ensuring the engagement of service users from ethnic minorities.
The research literature on user involvement and participation over the past 10 years or so has developed a considerable understanding of what works and how best to facilitate user involvement. The principles of good practice that have been established will continue to be important. However, the challenge for the future will be far more about seeing how personalisation affects service users and carers choosing to adopt self-directed support.
Research and Evaluation
There are major challenges for researchers. If user-controlled research is seen as superior to other models, this can be dismissive of findings which are automatically seen as operating to a different agenda. How can user-controlled research best be developed and supported alongside other models rather than seeing them as antithetical?
Enough is known about good practice in user involvement in health and social care that this should increasingly be the standard expectation rather than “best” practice.
It is easy for some articulate service users to become well known (both locally and nationally), with the risk that these will be the people who are always invited to participate in service development or evaluation, and who may not be able to represent the diversity of user experience. How to engage with harder-to-reach people and communities is a challenge for both practice and research.
The expansion of personalisation through the development of direct payments and the roll-out of individualised budgets changes the nature of power. The questions about “user involvement” in service development become less relevant and new standards need to be developed which explore how people are assisted in self-directed support (such as through brokerage and advocacy) so that they are better able to have choice and control.
Policy on user involvement
Government policy on encouraging the involvement of service users in the development and delivery of local services in order that they are more responsive to local needs takes various forms. The Health and Social Care Act 2001 introduced a requirement for the NHS to consult and involve service users. From April 2008 local involvement networks (Links) will replace patient forums and will be based in every local authority area (but independent of them) as a focus for user views and engagement on health and social care matters.
Paying service users
One issue which has been raised repeatedly is that of reimbursement of expenses and clarity over whether service users should be paid for their time and expertise. A guide published by the Care Services Improvement Partnership (CSIP) in 2006 established some principles and practice to improve consistency of approach, including information about service users receiving benefits.
Melanie Henwood is a health and social care consultant
Links and Resources
● The reports from Bec Hanley and from Fran Branfield and Peter Beresford can be downloaded from www.jrf.org.uk
JRF has supported a variety of work on user involvement over many years and other publications are also available from the website.
● The report on User Controlled Research by Michael Turner and Peter Beresford is available from the Involve website: www.invo.org.uk
● Reward and Recognition can be downloaded from www.dh.gov.uk
This article appeared in the 13 September issue under the headline “User-controlled studies”