Wise owls and professors: the role of older researchers in the review of the National Service Framework for Older People

Abstract

Aim  This article explores the involvement of older people in research and inspection, reflecting on the learning from the recent ‘joint review’ of the National Service Framework for Older People in England.

Methodological context  Working in 10 different localities, the ‘joint review’ comprised a formal inspection of health and local council services (carried out by the Healthcare Commission, Commission for Social Care Inspection and the Audit Commission) and an externally commissioned university‐led research project designed to ascertain the views and experiences of older people living in the 10 inspection sites. In total, 1839 older people were interviewed individually and through focus groups and an additional 4200 older people completed questionnaires. A distinctive feature of the research was the inclusion of a team of older researchers who had undertaken training in research methods in later life. Reflections of the older researchers and other members of the research team on undertaking this large‐scale user involvement project were ascertained via a day‐long seminar which was tape recorded and transcribed.

Learning  While many espouse the principle of ‘service user involvement’ in research, there is a need to move beyond the rhetoric of participation and any blanket assumptions about what it means to be an ‘older researcher’, a ‘service user researcher’ or indeed, a ‘professional researcher’. This means ensuring that within any given team (user‐controlled or collaborative) there are clear lines of accountability and equal opportunities for individual appraisal, support, and personal or professional development. Such considerations are key to working with ‘older researchers’ and encouraging diversity in the research workforce more generally.

Introduction

In the UK, there is growing commitment to involving service users, patients and the public (including older people) in the design, conduct, analysis and reporting of health and social care research. ¹ Increasing involvement in research generally implies more than engaging with people as ‘research subjects’ and reflects the policy drive for greater accountability in services to citizens and reducing professional control. ² , ³ The underlying assumption is that consumer participation in research will improve services by achieving greater fit with the priorities and needs of service users. ⁴ Some of the other potential benefits have been brought together by Smith et al. ⁵ in a synthesis of user involvement in nursing, midwifery and health visiting research. To this synthesis we add more recent findings and the particular potential benefits of involving older people.

(1) Involving service users at the design stage can help to develop or refine approaches or methods to suit particular research contexts, which can be beneficial for the research processes. This is particularly so when groups are ‘hard to engage’ or the problems are possibly stigmatizing, such as those involving mental health. ⁶

(2) The social integrity of the research is improved by rendering research processes or methods acceptable to participants, for example, by using trusted intermediaries or paying attention to accessible and jargon‐free language. These approaches may involve support for and training of a group of service users who in turn involve other service users, often through gathering their views and experiences in the way that other researchers would. ⁷ Rose ⁸ argued that people feel more comfortable sharing their experiences with other people using services.

(3) Enhancing credibility is possible by tailoring the research to service users’ interests and concerns from the start of the study. Adding user involvement to a research proposal also makes it more likely to get funded. ⁹

(4) Benefiting the research process is also possible, irrespective of whether this involves instrument design, conduct and access. There are however difficulties in evaluating the outcomes and impact of user involvement on the research process. ⁹ , ¹⁰ For example, Lindenmeyer et al. ¹¹ describe how, despite designing a sophisticated methodology to assess the benefits of involving healthcare users in diabetes research, it remained difficult to discern the actual difference that users had made to the final outcome of the project.

(5) There can be benefits for service users who are involved in research. Such outcomes have been thought of as therapeutic or empowering, and could be described as improving life chances. For older people, benefits are less related to improving future career prospects, but to improve senses of well‐being, activity and purpose similar in many respects to those benefits associated with volunteering. However, the extra income is likely to be as much important as opportunities to travel and to maintain or replace social networks.

(6) The involvement of service users in research may lead to processes of change to research cultures or organizational structures. According to Royle et al. ¹² involving service users in research is not an end in itself, it should produce change.

Taken together, the literature suggests that service user involvement is about developing agreed and acceptable partnerships in research; gaining benefits for the research process; and considering the positive opportunities that research involvement might offer for service users. Despite potential benefits, there is resistance to the idea in some circles ¹³ and only emerging evidence of meaningful involvement. ⁵ , ¹⁴ Turner and Beresford ¹⁵ argue that service users should be in control when it comes to initiating and managing research. They suggest that ‘user‐controlled’ research should be viewed as a new approach to undertaking research and that it should be clearly distinguished from ‘user‐led’ and ‘user involvement’ in research. Faulkner and Thomas ¹⁶ suggest that there ought to be more of a marriage in which ‘user‐controlled’ research is placed on an equal footing with ‘professional’ research. Discussing the work of the Royal Bank of Scotland Centre for the Older Person’s Agenda, which aims at supporting older people in partnership working in research and development, Dewar ¹⁷ argues that it should not be assumed that all service user researchers will want control over the research process and that some may prefer to work in partnership rather than ‘going it alone’.

Moves to involve older people in research have to contend with ageism and the assumption by others that they may not be able to participate because growing older inevitably results in reduced capacity for such activities. ¹⁸ However, such views are increasingly challenged through campaigning groups or forums run by older people, which seek out opportunities to build new capacity and to have a ‘voice’ on local issues:

We became extremely disillusioned about the willingness of the local authority professionals to listen to us and take account of our views, which were formed from listening to older people… When [the forum secured] training, which meant we would learn how to do academic research, we were delighted to accept. At last we would not have to rely on anecdotal evidence which seemed to be inadmissible to those holding the purse strings. We could use evidence‐based information in our lobbying to improve the quality of life for older people. ¹⁹

Leamy and Clough ²⁰ offered university‐accredited research training to older people, opening up an opportunity to carry out interviews as part of a study on housing decisions in old age. When this study concluded, 14 students decided that they wanted to continue their involvement in research. Launched in 2001, ‘The Interviewers’, latterly known as ‘Older People Researching Social Issues’ (OPRSI) established itself as a co‐operative and a registered private company (http://www.oprsi.co.uk). Having successfully made the transition from retirement to student, interviewer to researcher, the ultimate aim of OPRSI is to achieve ‘intellectual equality’ and to collaborate and indeed compete on equal terms with universities and other consultancy businesses. In effect, commoditizing the distinctive expertise associated with older age and lived experience,

[Older people] have the advantages of life experience and many topics of research, particularly in the realm of older people, will be familiar to you. Some would go as far as to say that it is you [the older person], and not the academic researcher, who is the expert. ²¹

The study

Drawing out lessons for supporting diversity and inclusivity in the research workforce, the aim of this article is to describe the collaborative partnership which evolved between OPRSI and a team of university‐based researchers while working on the joint review of the ‘National Service Framework for Older People’ (NSFOP) ²² in 2005–2006. Reflections of the older researchers and other members of the research team were ascertained via a day‐long seminar, which was held shortly after the final inspection reports were completed. The seminar was tape recorded and transcribed and followed an open agenda which allowed for reflection on what worked well and which aspects of the joint review process could have been improved. The section in this article which reports OPRSI’s views of working with the university‐based researchers was writtenup by one member of OPRSI. As Preston‐Shoot ²³ points out, it is important that the narratives of ‘experts by experience’ are reported directly.

The process of reflection enables us to address the questions raised by some service users about the viability of such partnerships with ‘professional researchers’. ¹⁶ Furthermore, while there has been much discussion of the value of service user involvement in research, much less is known about the practical aspects and which approaches work best ⁵ and we aim to respond to these questions: How should the partnership be managed? How can team working be promoted between ‘professional’ and ‘user’ researchers? What are the training and support needs of the collaborative? Will training turn older people into ‘professionals’ diluting their expertise born of experience? How can the independence of ‘service users’ be respected while ensuring compliance to ethical standards of practice? How does their involvement affect the quality of the work? Ultimately:

Are we asking older people to do the same as us [academic researchers] or is there something about their role that is equal but distinctly different? There is little guidance in the literature on what constitutes this equal but different contribution. ¹⁷

Joint review – method and context

The NSFOP ²² was launched in March 2001 as a 10‐year programme of reform in health and public services. Its aim was to set standards for fair, high‐quality, integrated services for older people in England: emphasizing the need for services that promote independence and improve health; concentrates on developments for key conditions (stroke, falls and mental health); and advocates attitudinal change to redress discrimination against older people and their carers.

In 2004, government ministers commissioned the three major health and social care regulators (the Healthcare Commission, the Audit Commission and the Commission for Social Care Inspection) in England to undertake a joint review of progress against the milestones set out in the NSFOP. ²⁴

The review involved a series of 10 ‘inspections’ in different locations across England (Buckinghamshire, Leicester, Brent, Dorset, Liverpool, Portsmouth, Redcar & Cleveland, Wiltshire, Greenwich and Medway) focusing on health services, social services and other council services such as leisure, community safety, thereby observing the full range of partnerships that aim at improving the well‐being and quality of life of older people within a defined geographical area. Somewhat controversially, older people were defined as those 50 years and older, though this was intended to reflect the important contribution that a healthy mid‐life can make towards achieving an active, fulfilled older age. In total, 40 health trusts and 10 local councils were included in the inspection programme. The inspection included analysis of data; review of documents; interviews with key staff and focus groups; analysis of older people’s case notes; and observation visits to hospital wards and to other service locations. Each of the inspections ‘drilled down’ in more detail on either stroke, falls or mental health. This topic was used as a ‘lens’ through which services for older people could be assessed from a ‘whole systems’ perspective.

A commitment to involving older people had been a key theme of the NSFOP itself, with older people informing its development through participation on a national reference group and subsequently on local implementation teams. ²⁵ In terms of the joint review, older people were involved in shaping its design and scope through a series of meetings and workshops held in different locations across the country. A reference group of older people advised the joint review management board and two older people were recruited as ‘lay inspectors’ on each inspection team.

A further challenge was how to involve local older people living in each of the 10 inspection sites so that their views and experiences could be integrated as part of the review scrutiny. An external tendering process solicited proposals for this work. While the inspection teams undertook work in one or two inspection sites, the external contractor was to manage ‘public participation’ across all 10 sites.

The successful tender was based on a joint bid between King’s College London, University College London and OPRSI. The ‘Three Years On (3YO) Project Team’ comprised 13 researchers. Seven of the researchers were from OPRSI and six were university employees or independent consultants. All but two of the researchers were more than 50 years of age. The team also included administrative staff and two project co‐ordinators. During the course of the project, other older researchers were employed on a sessional basis through existing contacts with the university.

The approach used by the 3YO Team to secure the ‘public participation’ of older people in the 10 inspection sites was by necessity multi‐method and designed specifically to meet the targets set by the regulators. In addition to carrying out a postal survey of older people’s views, the contractors were commissioned to undertake 160 in‐depth interviews in each of the 10 inspection sites (n = 1600). Other performance targets were set for the inclusion of older people from black and minority ethnic backgrounds; older people who were isolated at home; gay and lesbian older people; and other groups of older people who are often excluded in research and consultation exercises.

To meet these agreed upon targets, it was planned that at least four members of the 3YO Team would spend a week living in each of the inspection areas. A conference style event termed ‘Listening Event’ was organized in each area in the early part of the week. This involved arranging a lunch for older people followed by focus groups, attracting up to 100 older people per event. This was followed by visits to a range of voluntary and community groups such as over‐sixties lunch clubs, drop‐ins, social clubs and support groups. The team also interviewed individual older people in care homes, day centres and in their own homes – by telephone and face to face. In the interviews and discussion groups, older people were asked for their views on a wide range of issues to gauge to what extent, 3 years on, the NSFOP had made a difference to their lives. Once the ‘intensive review’ week was complete, the findings were speedily analysed and compiled, and the preliminary findings passed to the inspectors who arrived on site shortly afterwards.

When the original contract was signed the timescale for carrying out the work was 18 months. However, there was a delay in the commencement of the review, which meant that the ‘public participation’ work had to be completed during the winter months between December 2004 and April 2005. Organizing 10 Listening Events in a range of diverse locations and in a short space of time proved challenging. Despite using a standard approach to publicity and joint working with local voluntary and community groups, some Events were poorly attended while at other Events far more people would turn up than had booked places. Venues advertized as ‘accessible’ would often be ‘inaccessible’ and specialist catering (e.g. diabetic or gluten‐free menus) was nearly always late to materialize, as were taxis to return people home. Public Listening Events have become fashionable in the UK but to overcome the kind of logistical and environmental difficulties described above, most are now delivered through professional event management companies. However, the cost of running events in this way should not be underestimated. Discussing one such recent event:

This was no draughty church hall, sparsely attended by what are so often characterised as a few miserable‐looking old people with little else to do. No – this was the final deliberative exercise for the healthcare outside hospitals white paper. One thousand members of the public were crowded into the glamorous International Convention Centre… There were no embarrassing instances of microphones refusing to work, no disgruntled people at the back shouting “Can you speak‐up”. No wonder the deliberative exercise has cost nearly £1m. ²⁶

The findings of the review itself have been reported by the Healthcare Commission ²⁴ and the 3YO Team. ²⁷ In total, the 3YO Team interviewed a total of 1839 older people and an additional 4200 older people completed questionnaires. All the performance management targets were met.

Working with ‘university researchers’

On reflection, members of OPRSI said that they all enjoyed working on the joint review. It was perceived to have afforded many opportunities to develop their new careers as researchers and was by far the largest and most high profile project on which they had worked. It was considered a privilege to have been asked to join the bid and ‘an experience not to be missed’. What OPRSI most enjoyed about the work was the opportunity to meet with other older people in their own clubs and meeting places, and to be able to discuss issues face to face. Members appreciated working alongside a team of ‘experienced professionals’ as there were many learning opportunities, for example, how to conduct a focus group using an interpreter:

It proved an invaluable learning curve in being able to work alongside a team of very experienced professionals in the field... OPRSI Member

As an approach, the joint review was considered to be more enlightening and challenging than the usual questionnaire or telephone interview projects on which OPRSI had previously worked. It was also felt that taking part in the review helped OPRSI to develop themselves as a team:

Taking part in this project I feel helped the group to work together as team with us all being involved in all aspects and supporting each other as and when required, something we had not needed to do in other projects. OPRSI Member

On the other hand, the intensive review week was considered to have been very demanding and ‘tough going’. For some OPRSI members, the pace was a ‘shock to the system’ after having retired from working life. In this project, OPRSI were paid a commercially comparable consultancy fee for their services and this was a sizeable part of the overall budget. At the outset, OPRSI’s contribution was made explicit in terms of a contract signed between the regulators and the 3YO Project Team. However, when concerns were raised by OPRSI (and some of the other team members) that the work schedule was too demanding there was little scope for renegotiation of the terms of the contract. This manifested itself as a clear tension between ‘contract (project) management’ and the scope for ‘user control’. Incidentally, this was not a straightforward ‘user/professional’ dichotomy given that other older people outside OPRSI had an interest in the oversight of the 3YO contract by virtue of their status as ‘lay inspectors’ and members of the review governance board.

The rapid succession of intensive review weeks meant that OPRSI members were unable to remain on site when the inspection proper began so they were not able to make a direct contribution or to see if and how their findings were being used. For OPRSI the sense was of parachuting into an area, extracting the necessary information and then moving on to the next site with only limited opportunities for reflection and learning. Being tokenistic was a particular concern in that OPRSI often left meetings with personal requests from older people to follow things up or find things out, many of which were beyond their control to do anything about personally although they did pass on any concerns or complaints. Management meetings between the regulators and the 3YO Project Director were held in London. This left OPRSI with a sense of ‘them’ and ‘us’ in which they felt like junior partners and back to being the ‘interviewers’ although they recognized that other members of the research team did not attend either.

Discussion

‘Service user’, ‘lay’, ‘professional’ and indeed ‘older’ are all transitory states ²⁷ rather than permanent or fixed categories. This was certainly something which perplexed OPRSI. Echoing the process whereby some service users become labelled as the ‘usual suspects’, ²⁸ the more OPRSI worked and gained experience of doing research, the more they perceived themselves as developing expertise, but in so doing the further they felt from ‘ordinary’ older people. In effect, the boundaries became increasingly blurred over the lifetime of the project between who was ‘lay’ and who was a ‘professional researcher’. In terms of ‘expert by experience’ ²³ and the assumption that service users or older people will have specific kinds of experiential knowledge at their disposal there was also recognition from OPRSI that they needed to learn about many ‘older people’s issues’. For example, it was one of the university researchers who had the most knowledge about the technical aspects of accessibility and participation such as the importance of using a hearing loop at Listening Events and having large print documents in a very specific font and colour.

According to Thompson and Thompson, ²⁹ reductionism and oversimplification are significant problems for the development of empowering forms of practice. In many contexts, terms such as ‘service user’ and ‘professional’ conceal too much diversity for them to be useful. ³⁰ The potential to drawin this diversity is often overlooked ³¹ and as Preston‐Shoot ³⁰ points out, discussion of involvement of service users tends to impose a uniformity or homogeneity that denies the range of identities, knowledge, skills and experiences. Indeed, it may actually be discriminatory to make such blanket assumptions. To assume, for example, that older researchers will need to be treated differently would constitute a form of age discrimination. In relation to 3YO, for example, it was not just the older researchers who were exhausted and sometimes left feeling disempowered by the gruelling joint review schedule but the team as a whole. Indeed, it is difficult to locate any special considerations which should apply to service user researchers but not other researchers. This is illustrated by a quote from a service user (quoted in Turner and Beresford ¹⁵ ) talking about user‐controlled research:

I think one of the issues for user controlled research is that, since the researcher is likely to be a service user, it’s got to respect their needs, not overburden them, treat them properly and pay them properly.

It has been suggested that there is a particular issue around how to maintain quality standards in research, which involves service users ³² , ³³ and a consensus appears to exist, namely that to participate effectively training should be offered to service users. ²⁸ Indeed, when service user researchers are part of a research team, there is a risk of thinking in terms of a skills escalator in which ‘academics’ and ‘professional’ researchers are positioned at the top, and ‘service users’ and ‘lay’ people at the bottom. This tends to overshadow the fact that in all research teams, including those comprised wholly of ‘professional academics’, individuals will have very different skills and experiences. Equally, quality – or lack of it – should never be associated with inexperience but rather with the way experience is managed. Certainly, one of the key learning points from the 3YO Project was that there are many different skills escalators and that it is important to allow everyone in the research team to position themselves accordingly. It is this honest appraisal, rather than any preconceptions about age and status, which should guide the way a project is managed. In the 3YO Team there were many anomalies, such as an older person being at the top of the ‘skills escalator’ by virtue of his/her status as a retired professor. As Martin and Henderson ³⁴ point out:

Individual appraisal is the identification of training and development needs… People need training and development to help them learn and practice new ways of working – even those who have extensive professional training need support to develop as conditions and requirements change.

Indeed, while research is often conceptualized in terms of only a narrow set of tasks such as literature searching, interviewing, analysis and compiling, in reality many more skills and competencies come into play, especially those rooted in team‐building, communications and project management. For example, two OPRSI members took it upon themselves to act as the welcoming party at Listening events, ensuring delegates could always get parked and knew exactly where to go. Such informalities and impromptu actions were perceived by the team to have made a real difference, creating a relaxed and informal atmosphere in which delegates reported feeling comfortable sharing their views and experiences.

Discussing ethical considerations around the protection of research participants, Hogg ³⁵ identified the researcher’s competence as a risk factor; less experienced researchers are perceived to pose a greater risk than researchers who are more experienced. How competence and performance are managed are thus of critical importance in research and this should always be a central concern regardless as to whether the researchers are service users or non‐service users. According to Reed et al., ¹⁸ while identifying a lead researcher or principal investigator clarifies responsibility and accountability for funders and ethics committees, such a hierarchical model does not always facilitate involvement and more thought needs to be given to working with organizations or groups with ‘flat hierarchies’. Indeed, once we begin to think in terms of supporting the research team or collaborative as a whole there is wealth of transferable expertise within mainstream human resource management which can help re‐position and push forward thinking around ‘user involvement’ in research. For example, McLellan et al. ³⁶ described the usefulness of the ‘360 degree appraisal’ in inter‐professional practice, where teams bring together different levels and kinds of expertise. The ‘360 degree’ method of appraisal is so‐called because it seeks to include more than one perspective of an individual’s performance thus embracing a more rounded (360 degree) view. It is also distinct from more traditional appraisal in that it invites participation from team members rather than solely a ‘line manager’.

Conclusion

All too often, academic research is criticized because it is remote from the ‘real’ world. At its most simplistic form, learning from each other and bringing many different kinds of ‘expertise’ to the research process are perhaps what we are really trying to achieve when we talk about ‘service user’ or ‘older people’s’ involvement in research. While many espouse the principle of ‘service user involvement’ in research, there is a need to move beyond the rhetoric of participation and any blanket assumptions about what it means to be an ‘older researcher’, a ‘service user researcher’ or indeed, a ‘professional researcher’. This means ensuring that within any given team (user controlled or collaborative) there are clear lines of accountability and equal opportunities for individual appraisal, support, and personal or professional development. Such practices facilitate ethical and empowering ways of working and they support diversity in the research workforce. At the end of the Listening Events, delegates were asked to complete an evaluation form. The comments consistently reflected that what matters most to the ‘research subjects’ was not the age or status of the researcher but the competency of their performance:

Couple in charge put us at ease.

The [facilitators] were good but over reticent…I learnt a lot from fellow contributors, but could have learnt more from the [facilitators].

The facilitation from the front was excellent. The communication was pitched just right… It obviously worked since people kept on producing new and often moving accounts.

The 3YO Project Team includes the following members: Les Bright (Independent Consultant), Roger Clough (Eskrigge Social Research), David Fox (OPRSI), Bert Green (OPRSI), Barbara Hawkes (OPRSI), Steve Iliffe (University College London), Jo Moriarty (King’s College London) Gwyneth Raymond (OPRSI), Jane Wilcock (University College London), Pam Wilson (OPRSI) and Colin Watkins (OPRSI).