Editorial

Involving service users in the development and evaluation of health care and services – good practice and the need for a research agenda

Mark Hayter
School of Nursing and Midwifery, University of Sheffield, Sheffield, United Kingdom

PP: 103 - 105

Article Text

Nurses throughout the world are increasingly charged with either developing new health services for particular client groups or evaluating existing services. An emerging trend in this process, and one driven by health policy makers, is the involvement of service users in this process - a process often referred to as Public and Patient involvement (PPI). This development is supported by many, as a valuable addition to health service development especially when services are to be targeted at socially excluded groups, ethnic minority groups or services designed to be attractive to certain age groups - for example adolescent health (Hayter, 2005). It is also a key element of nursing practice with families and communities and as practitioners and researchers we need to recognise the added value the 'patient' or 'service user' perspective can bring to our work. This includes a 'grounding 'of our work into the world of the consumers of our care and services and paying clear reference to their needs and views - not just as recipients - but as active and substantive contributors to how care and services are developed, delivered and appraised. It is essential, therefore, that developments with individuals, communities or families have user involvement clearly embedded within them from the beginning.

Another incentive to involving service users in any kind of evaluation or development study is that funders of such work expect a higher level of 'public' involvement than has often previously been the norm. This is driven by the increasing role of 'consumerism within health care - an often maligned force. However, in recognising the value of bringing clients and service users into the process of delivering and designing services this can be seen as a more positive aspect of the commercial culture in health care - marketing and design in the private 'commercial' sector has been doing this for years to aid in the development of new 'products' to market.

For clinicians and researchers PPI involvement can have a number of advantages. User involvement means that professionals are more likely to identify research priorities and measure outcomes that are important to service users as well as professionals. The involvement of patients/ clients early in the planning process can ensure that this is embedded into the design and aims of any project - for example patient involvement in the development of questionnaires or interview schedules can enhance their effectiveness (Hayter & Harrison, 2008).

Public engagement with projects can also help to generate a feeling of involvement and ownership of services. This is important in generating close ties with target communities. If users of a service are seen to be actively engaged in its delivery or development this will help the acceptability of a service - an issue that is especially useful with marginalised groups where there may be mistrust of health care services and professionals. Service user involvement is also extremely useful in making sure services are designed with the needs of the target community in mind. In that respect representatives of these populations are invaluable in helping to guide projects and design interventions - they know the needs of the target population the best and may help avert costly mistakes. People who use services can be your allies if they really feel they are being involved and respected - so nurture an ethos of partnership. This involvement can also help publicise care and services by 'spreading the word' through social groups or communities. This is especially important as the power of user groups in health and social care grows across health and social care systems in the West.

There is no doubt that involving service users can be beneficial - but there are dangers also. Charges of tokenism are often made - as are accusations of involving service users at the last minute, without pre-planning. The use of service users simply to comment on a finished research plan or service model should be avoided - their involvement from as early as possible in the process should be aimed for. Try to show situations where user involvement had led to a clear change or extra inclusion or to where the opinions of users has influenced data collection, analysis or report writing. As researchers we should be looking at the advantages for service user involvement in terms of enhancing rigour - for instance member checking emerging themes in qualitative research or face validity with questionnaire design.

Given the importance and value PPI involvement can have - selecting the right patients or service users to include in any evaluation or service development project is a key consideration - as service user involvement grows there is always a danger that it will create 'professional patients' - often with specific agendas that may not be reflective of the wider community or client group. These issues, together with other matters such as how service users can be selected and what contributions can they make to service development and evaluation make this aspect of health care challenging.

A number of bodies now exist to provide advice and encouragement for the involvement of patients/service users in health related projects and studies. In the UK 'Involve' (Involve, 2011) provides excellent support for PPI involvement and provides some principles of good practice in this area - such as:

• Making sure that all the health professionals involved in the project are aware of the nature and purpose of service user involvement from the outset
• Building in the means to compensate service users for attending meetings - travel expenses for example - and appraising the possibility of a reward for involvement, in some projects modest retail vouchers have been used
• Be realistic about what service users can contribute - both in terms of their time and ability. Don't be vague about the role service users will play in the project - have some written material on this and keep a check on whether it is being adhered to as the project moves on
• Allow time for groups to become familiar with each other and for working relationships to be formed. Service users may not be used to the format of meetings and organisational policies and procedures
• Having clear information about the project in a form that a lay person can understand
• Identifying potential barriers that need to be overcome in the planning phase of any project

Like all relatively new elements to delivering, evaluating and planning health care and services the PPI process creates a research agenda. The use of patients and service users is now widespread enough for empirical work on the phenomenon to inform its future development. Some work has been done already, for example Hanson et al. (2007) and McKeown, Clarke, Ingleton, and Repper (2010) but more is needed. A range of possible research areas exist, but some key issues are;

• What about sub-groups within service users - how are patients from ethnic, cultural or sexual minorities going to be represented? A potential pitfall of PPI involvement is that is becomes another discriminatory process - how can this be avoided?
• How can we get PPI involvement in services that deal with sensitive issues? It may be easier, say, to recruit patients from a diabetes service than the sexual health, palliative care or substance misuse arena. Linked to this issue - are there any ethical or confidentiality concerns with PPI for a particular project?
• What are the best ways to select PPI involvement when a service is used by a very diverse group of individuals?
• Service users can often be from marginalised and/or vulnerable groups which may mean that they distrust 'mainstream health care' - how can we build trust and target key individuals as representatives?
• How can diverse individuals be assimilated into a cohesive group?
• How do we include patients with mental health or learning disabilities - and what role do their carer's have in the PPI process?
• What forms of evaluation are used in measuring PPI involvement?
• How can 'families' be involved in PPI work?
• How are ethical issues addressed in PPI work? How is the involvement of minors managed?
• How can service users be involved in data analysis - and maintain methodological rigour and quality?
• How is conflict in PPI groups avoided or managed?

This list is not intended to be exhaustive - but to set out some of the challenges of this area of health care work. The use of patients/service users has real potential for the development of quality care and services. It is particularly useful for designing 'tailor made' services and interventions for specific user groups. However, it must not be adopted casually - planning and aiming for 'real' involvement is important - anything less is tokenistic and, ultimately, could disempower rather than empower our client groups.

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