Although the principle of user involvement is now generally supported, implementation in many voluntary organisations has not been as quick or extensive as some would like. Based on an action research project involving service users, managers, staff and trustees, this report explores the processes of change in 11 voluntary organisations seeking to increase user involvement. Drawing out broader lessons for those working to increase user involvement, the report:
- Highlights critical factors that enable change;
- Can be used to assess if the conditions for developing ‘user-centred’ user involvement exist
- Can also be used for planning change.
The principle that users of services should be involved in decisions that affect them is now generally supported. However, problems of interpretation and practical implementation have led to frustration amongst users and professionals alike. This action research project aimed to support and evaluate increased user involvement in four voluntary organisations. Researchers at the Centre for Institutional Studies at the University of East London worked with users, carers, staff, volunteers and trustees in organisations that were not already run by and for service users to implement specific plans. By evaluating processes of change in these organisations, the study drew out lessons which could be useful for other voluntary organisations.
- Interpretations of user involvement could include almost any kind of engagement with the organisation, from users who wanted to be able to voice an opinion and be heard by decision-makers to staff who wanted user involvement in tidying up beds in a night-shelter.
- The study distinguished between 'management-centred user involvement' - service users taking part in existing structures with the agenda defined by the organisation - and 'user-centred user involvement' - where service users' objectives and priorities became the organisation's objectives and priorities. The findings suggest that users would only really value 'user-centred user involvement'.
- There was no single template for involvement. Each organisation took a different approach, exploring what processes and methods helped it to change.
- There were, however, some common enablers of and barriers to change. The long and often slow process of change was usually driven by the persistent actions of leaders, both users and managers, to optimise the enablers of change and to overcome the barriers to change.
- Key enablers were: a consistent commitment to user-centred user involvement, translated into practical change at many levels; and supportive leaders. People in leadership roles, who were influential within existing power structures and who operated with a facilitative leadership style, opened up opportunities for users to have influence themselves.
- The sustainability of progress was often fragile because it depended on variables such as organisational and individual commitment, leadership style, key individuals and availability of resources.
- Much of what worked was about building strong relationships between those in decision-making roles and those seeking to have more influence.
The policy of user involvement is now explicit in most statutory and voluntary initiatives. However, implementation is still not straightforward. This action research project wanted to respond to the demands of service users and the expressed good intentions of professionals to increase user involvement in the governance and management of their organisations. The four organisations involved were chosen from a previous project which assisted eleven voluntary organisations with reviewing and planning their user involvement.
What is user involvement?
Users' interpretations of user involvement ranged from wanting to voice an opinion and be heard by decision-makers to making friends. The study therefore used a broad definition of involvement to accommodate users' perceptions that it could include almost any kind of engagement with the organisation. The researchers found it helpful to distinguish between 'management-centred user involvement' - where service users took part in existing structures with the agenda defined by the organisation - and 'user-centred user involvement' - where service users' objectives and priorities became those of the organisation. This shed some light on the problem of defining user involvement. This project suggests that users would only really value 'user-centred user involvement' and would view anything less than this as tokenism. While the study found no single recipe for managing change or increasing user involvement in voluntary organisations, it drew out key factors enabling and hindering involvement.
Factors promoting user involvement
A focus on users' priorities
Change occurred in organisations which not only encouraged users to participate in discussions and decisions, but focused on the issues they identified as important. This focus operated at three levels: thinking about users as a stakeholder group; opening channels of communication; and enabling users to use those channels to communicate their priorities and concerns.
The role of leaders
The commitment of leaders was important. 'Leaders' included chief executives, user representatives, trustees and middle managers. Change occurred where leaders gave a strong enough sense of direction whilst allowing sufficient opportunity for change. Successful leaders negotiated the principles of user involvement and enabled others to translate them into actions.
Clear statements about involvement helped start debates or provided a standard against which progress could be measured. A key dimension to vision and commitment was clarity about who the organisation was for and therefore who it was trying to involve. Some organisations had only one category of service user. For others this was not a straightforward issue (e.g. where an organisation had been founded by carers to benefit service users).
People in leadership roles who adopted a facilitative rather than a controlling style created the conditions for others to develop and implement change. Some of these leadership roles were formal positions in the management structure or part of a user group structure. Others were unofficially leading by promoting user involvement amongst users or staff. More user-centred activity occurred where leaders:
- were committed to making their organisation more user-centred;
- had a broad vision of what a user-centred organisation would look like;
- created space for users and staff to debate user involvement and to develop and try out ideas;
- asked for and listened to a full range of views;
- encouraged and supported users and staff;
- allocated resources for user involvement;
- learnt from and with others;
- took risks;
- balanced getting involved and standing back to get an overview;
- stepped aside to make space for individual users and user groups.
Quality of dialogue
Good quality two-way communication between users and decision-makers benefited users and promoted change in organisations. An emphasis on dialogue highlighted that the views of both parties were equally valid. Many users' relationships with managers were characterised by a 'them and us' divide. Inequalities in knowledge, resources and power were undeniable but conscious efforts to put these on one side to enable an honest exchange of views were crucial for enabling change.
Presence of users
The presence of users at an event or meeting or simply through their use of a service did not necessarily mean that they were engaged in or influential in what was going on. However, maximising the presence of users in a variety of settings both enabled organisations to change and represented a significant change in itself for some. The presence of users within a range of organisational activities had potential impacts on four levels:
- opportunities to influence formal decision-making;
- demonstrating users' interest in getting involved;
- opportunities to become part of networks of users and others;
- opportunities to learn about each other's experiences and priorities.
Some users felt 'involvement' was about influencing services to achieve improvement for all users. They wanted to be involved in activities such as meetings or responding to documents. Others did not expect to become involved beyond their individual use of services even though they might have strong views about them, both positive and negative.
Users valued meetings with staff as an opportunity to make development of user involvement user-centred. There was a value for many participants in spending time together. Sometimes the atmosphere was adversarial and users criticised managers and demanded changes. On other occasions there was an atmosphere of solidarity and participants worked together with equal opportunities to influence decisions.
In the smaller organisations managers as well as front-line staff often knew about the day-to-day experiences of users. This knowledge could be used in service development decisions although other factors could intervene, e.g. restrictions on the use of funds.
Allocation of human and financial resources enabled change but had to be appropriately applied to increase user involvement. A specific budget for user involvement activity clearly enabled change. Sometimes, though, the allocation of money also demonstrated a tangible commitment to user involvement, beyond its practical use.
Although money was important, staff time was key. Specialist posts or designated parts of job descriptions that focused on user involvement did give an impetus to communication with users. However, the question of how much time all managers and front-line staff spent getting user feedback and getting people involved was a key determinant of the breadth and depth of change.
Policy and funding context
Policies on user involvement from central and local government and purchasing and funding bodies had acted as a lever for change in all the voluntary organisations in this project. Internal responses to changes in the external environment varied depending on: the organisation's stage of development of user involvement; the intentions of the external agency; and the degree of commitment to user-centred user involvement on both sides.
External pressure to demonstrate user involvement led to some tokenistic responses; for example, in one organisation the trustees rapidly agreed a user involvement policy to satisfy a requirement set by a funder.
External support and scrutiny
Involving external researchers and consultants added impetus to the processes of change. For example, timetables agreed with external people were perceived as difficult to alter. Direct contact between the researchers and service users appeared to raise the profile of user involvement internally.
External support for user involvement also came from the user movement. Few of the users who participated in the action research were strongly connected to independent user organisations. This meant they lacked external reference points for their own experiences and expectations of involvement.
Voluntary organisations, especially in fields where user involvement was a topical issue, appeared to compete with each other to demonstrate their legitimacy as contributors to policy debates and also with funders who had user involvement as one of their criteria.
Equality of opportunity
The breadth and depth of change in one organisation demonstrated that equality of opportunity could be achieved for users at all levels of the organisation. For example, an active user group and the chief executive shared a vision of the organisation moving towards becoming 'user-led'. Part of being user-led meant that a majority of the trustees on the governing body should be either service users or people from the organisation's constituency of intended beneficiaries. The vision also included the assumption that every position, paid and voluntary, could be held by someone who was a service user and otherwise suitably qualified. Further, some paid posts were designated for recruitment of a person with direct experience as a service user. This approach had the effect of raising expectations of potential candidates and gave out a clear message to everyone in the organisation that the contribution of service users was needed and expected in all roles.
Continuous monitoring and evaluation
Where participants in organisations continuously monitored and evaluated their policy and practice in relation to user involvement this supported the implementation of change. By frequently asking themselves and others what worked well and why, users and managers developed systems of continuous feedback which enabled them to learn and adapt.
Barriers to implementing change
The organisations in this project all had positive intentions and practical plans for increasing user involvement. However, progress did not always go according to plan. Implementing change was more difficult or slower than anticipated and in some cases plans were not carried through.
Even a strong commitment to user involvement in one part of an organisation was often undermined by a fragmented structure or approach. Most of the larger, national organisations were unable wholly to co-ordinate user involvement or to develop an overview which could be used to plan a strategy for change. The fragmentation of user involvement policy and practice was affected by a number of factors:
- diversity of activities;
- more than one group of users;
- complex committee and staffing structures;
- diversity of priorities, structures, size between regions;
- disagreement over the meaning of 'user involvement' and whether it included community involvement.
The role of leaders
In most organisations there was not a clear-cut distinction between leaders with controlling or facilitative styles. Most individuals used both styles but had a predominant way of working.
However, a controlling style of leadership could be evident even in situations where the goals and intentions of all the participants, including the leaders, were strongly in favour of increased user involvement. These leaders, who could be professionals or occasionally users, had many qualities such as, a commitment to increasing user involvement and an abundance of ideas and energy. However, in tandem with, and possibly inextricably linked to, these qualities was a tendency to retain most, if not all, of the control over decisions on user involvement.
In some organisations service users were not present above a certain level of seniority in democratic membership structures and in senior management. For example, users could be on some sub-committees, but not on the board of trustees. In some cases, involvement was limited to periodic consultation about services. Elsewhere, users worked as volunteers assisting paid staff but there was no expectation that they might become employees themselves.
Fashion and rhetoric
Some user involvement initiatives appeared to be more about image than substance. One senior manager indicated that their main motivation for wanting to be selected for this project was because a 'competitor' might be selected. A manager in a small organisation brought in resources through this project and partnerships with other agencies, but it was not clear whether this entrepreneurialism was supported across the organisation.
Involvement of the few
The involvement of a small proportion of service users could present a barrier to others getting involved. This pattern occurred to different extents in each organisation.
Some users were perceived to be apathetic by staff or actively involved users but might, with the right opening, have spoken up and got involved. This perception of apathy was often based on the experience of trying to get people involved in conventional approaches.
Three aspects of staff turnover affected user involvement.
- the departure of staff with specific responsibility for user involvement;
- turnover of staff in small teams or in smaller organisations took up considerable staff time both covering for vacancies and in recruitment, selection and induction;
- continuity of relationships between staff and service users was crucial. In some organisations support staff acted as advocates, interpreters and facilitators; roles that require a good relationships built up over time to be effective.
The researchers suggest that the enablers of change and absence of the barriers to change identified are key conditions for implementing user-centred user involvement. What worked in this project was a combination of a user-centred mindset and a customised process for change. They conclude that individuals and organisations need to go on their own journeys and hope that this study's findings may provide some useful advice.
About the project
The project was undertaken by Paul Robson, Nasa Begum and Michael Locke at the Centre for Institutional Studies, University of East London. They worked with: two providers of services to disabled people, one large national and one regional; a local advice and support agency for people facing problems with drugs, housing, unemployment, offending; and a local community organisation for a specific group of minority ethnic women. The team consisted of one disabled and one non-disabled researcher and also hired a service user as an interviewer. The project shared information and experience with seven other organisations and all eleven took part in a practice exchange event. This wider experience contributed to the research report and enabled testing of ideas drawn from the four principal organisations.