Dean, Faculty of Health and Social Care Sciences,
Kingston University and St George's, University of London
Introduction
This paper draws from my research on service user involvement and older
people and discusses how by involving older people, knowledge creation
becomes a personal and social process. I argue that by learning from,
and understanding the worlds of others, we can change the way
researchers think about what they are doing and thereby create better
quality research. I am indebted to a number of people who have
contributed to my thinking through our work together. Our common
interest has been in developing a conceptual approach and evidence-base
for understanding of the values, approaches and methods of involving
patients and the public in nursing and health services research. We
have been fortunate to work throughout with Sally Brearley, who as a lay
representative and applicant on most of the studies has provided fresh
insights into involvement and by her perceptive questions challenges
us to think differently.
User involvement broadly encompasses different
approaches to direct participation or representation (Beresford 2003,
Smith et al 2008) – either as a one off occurrence or an ongoing
relationship. The development and maintenance of this relationship of
involvement can vary considerably; see for example Arnstein’s (1969)
levels of involvement through consultation, collaboration and control.
In this paper I am interested in the personal and
interpersonal relationships between researchers and service users and
what that means for changing how we think about research and the
politics of knowledge creation. I think of myself as first and
foremost a nurse and then an academic and now a manager. It is my
experience as a district nurse that motivated me to ask questions and do
research. I therefore want to start with looking over my shoulder at
my PhD study, which I started part-time while working as a district
nurse.
My PhD focused on how doctors and nurses
collaborate on medication management for older people. It evaluated a
patient-held drug record in terms of how it improved information and
doctor/nurse agreements about what medication their older patients were
taking. It was a before and after study and it showed that, at both
time points, the professionals did not report the same information about
medication their patients were taking, and indeed relied on the older
people themselves to tell them. This highlighted for me, what we know
intuitively, that the patient knows best. Furthermore it challenges the
conventional understanding of compliance, turning it on its head to
consider the issue of the professionals’ non compliance rather than the
patients’ (Ross 1991). This raised the whole issue, which I go on to
discuss next, how we can find ways to listen more effectively to what
our patients, in this case older people tell us so we can use this
information to improve practice.
Learning from older people involved in a study on falls
This study was one of 11 commissioned in a basket
of studies to develop the evidence around primary care in London. With
considerable foresight, the commissioners required all studies to have
consumer involvement and to support this they provided additional
funding for training for both the researchers and the service users. We
invited older people with a common interest in preventing falls to be
part of a consumer panel. They worked alongside us and contributed in a
number of ways. Total membership was 21, ages ranged from 60-80 and the
average attendance at meetings was 13. The role of the consumer panel
encompassed:
- Advice on the interview schedule,
- Participation in the pilot study,
- Insight to the first level of analysis from
the interview data and, using the anonymous data from the interviews,
development of stories / vignettes. A vignette was then used to
structure the interview with the health and social care professionals,
- Contributing to local dissemination of the
results e.g. by speaking at community meetings, and influencing
strategic change on falls prevention through committee roles on the
PCT.
At the end of the study we asked the consumer
panel for some reflections. Not surprisingly they regarded their
involvement as essential and not “tokenistic” or an optional extra.
They cautioned the research team on use of language, requesting we
express ourselves simply and avoiding the professional obsession with
acronyms. They asked to be treated as equals and not as one participant
described a “Faberge egg” (Ross et al 2005).
One of the powerful bits of learning for the
research team was the important contribution the consumer panel made to
the quality of the research, how relationships changed as the study
progressed and the way the service users challenged our priorities.
Their role in disseminating knowledge was also important, because they
were readily given recognition by service partners, both the PCT and
the Local Authority who were keen to access the expertise of the
consumer panel to inform a user view on their falls prevention
strategies.
Involvement of service users with long term conditions in a study of organisational governance in primary care
This study was funded by NIHR SDO to explore how
changing organisational governance and incentives in health care has an
impact on the professional experience working with people with long
term conditions (Ross et al 2009). We carried it out in 3 case study
sites (PCTs) – one in London, Surrey and the South West. Here I am
going to explain how we worked with service users. I am going to pick
out two interconnected issues to illustrate how we have developed our
understanding of, and got better at the process of involvement.
Firstly we also had a national/overarching
service user advisory group and three local service user reference
groups (SURGs), one drawn from each case study site). All participants
had experience of a long term condition – either a non psychotic mental
health problem or a physical condition e.g. stroke or COPD. At the
beginning of the study we worked with the SURGs to explore their views
on good and not so good care. These views were collected to ground the
professional interviews in the experience of service users.
Establishing these groups, ensuring engagement throughout the study and
enabling opportunities for the service users to not only understand
the nature of the research, but also to feel they were influencing its
methods and outcomes was important. All of this required considerable
personal work and relationship building.
Secondly, there was the issue of researchers own
learning about ways to achieve success in meaningfully engaging service
users. As researchers were working separately in three sites, but
working to a common approach, we had to find ways to train and support
them. Perhaps not surprisingly we had to overcome a level of anxiety.
Although they were all highly skilled and experienced researchers with a
social science background they expressed a lack of confidence about
entering into new, somewhat uncharted territory of building
relationships with service users in this way. They needed support and
reassurance to think about forging and maintaining relationships to
develop the real opportunities for learning whereby the experience of
long term conditions expressed through the views of service users could
be used to inform and influence the conceptual framework of the study
and the focus of the interviews with managers and professionals. We
addressed this by providing training facilitated by one of the
co-applicants who is also an expert in representing service user views,
through informal learning and sharing in team meetings and email
support.
Different domains for learning
The examples described above are selective and in
the interests of brevity, may appear oversimplified, but I hope they
illustrate some points about the how service users may become involved
and the opportunities and challenges this poses for researchers in
sometimes having to rethink relationships.
The framework below brings together the
different types of involvement of service users. It is derived from a
review of the literature and evidence of service user involvement in
nursing, health visiting and midwifery research (Smith 2006) and
attempts to conceptualize the different stages at which service users
may be involved in research. It illustrates the multiple domains for
involvement, either as part of researcher-led or user-led research or
part of a partnership approach. However, it is constructed in terms of
requirements of research, rather than thinking about what service users
may gain from participating, also it is not able in this form to
describe the personal and interpersonal relationships that need to
develop between professional researchers and service users. For that we
need something more sophisticated and dynamic, which is a challenge
for future research.
There is no doubt that user involvement can be a challenge for
professionals. It takes time, resources and different sorts of skills.
Sometimes it means changing plans, modifying research designs and
shifting priorities. Success, I believe comes from attention to
“personal” work, meaning researchers responding to the small things
that matter to service users for example follow up after meetings,
making individualised arrangements for people to attend meetings,
identifying and responding to the preferred way of receiving
information etc.
In conclusion then what should we doing as
researchers? I believe if we are to be able to use research to change
practice then shifting the way we think about research, the questions
we ask and the way we go about it has to be grounded in the authentic
experience of service users. To shift the balance of power in research
we need to give some thought to the types of relationships we have and
how we develop them with key participants, whether they are working in
collaborative relationships or the more traditional
researcher/participant model. In this context, I believe we can improve
the quality of what we do by being more open in our relationships with
service users and listening to their challenges, reflections, sense
checking and critique.
Acknowledgements
This paper is based on a keynote given at the
British Society of Gerontology conference in July 2010. I am grateful
to many colleagues who have worked with me, in particular Elizabeth
Morrow nee Smith, Sheila Donovan, Sally Brearley, Sara Christian and
Ursula Hawgood.
References
Arnstein A. (1969) A ladder of citizen participation. Journal of the American Institute of Planners (AIP Journal), 35(4) 216-24.
Beresford P. (2003) User involvement in research: exploring the challenges. Nursing Times Research, 8(1) 36-46.
Ross F.M. (1991) Patient compliance – whose responsibility? Social Science and Medicine, 32(1) 89-94.
Ross F. Donovan S., Victor C., Brearley S.,
Cottee M., Clarke E., Crowther P. (2005) Involving older people in
research: methodological issues. Health and Social Care in the Community, 13(3) 268-275.
Ross F. et al (2009) The professional experience
of governance and incentives: meeting the needs of individuals with
complex conditions in primary care. London: NIHR SDO (available online: http://www.library.nhs.uk/Improvement/ViewResource.aspx?resID=343611).
Smith E. (2006) Involving service users in
nursing, midwifery and health visiting research. Briefing Paper. London:
NIHR SDO (available online: http://www.sdo.nihr.ac.uk/projdetails.php?ref=08-1305-069).
Smith E. et al (2006). User involvement in the
design and undertaking of nursing, midwifery and health visiting
research: a review of evidence and practice. International Journal of Nursing Studies, 45(2), 298-315.