Being involved in health and social care research in a more than marginal way does not mean being somehow expected to have all the answers, which is also unfair.
Valuing what patients, service users and their communities bring need not result in devaluing the knowledge and skills of team members who are trained researchers but without lived experience. Instead, when varied perspectives can be shared and views voiced, especially in grappling with difficult questions, deeper insights may arise.
Many of us have been in situations where we felt mainly ornamental, rather than able actively to influence what happens. This can be uncomfortable, even if people around are pleasant. An ornament may be admired, perhaps cherished, yet not exactly central to what is taking place in the room!
In the UK and beyond, major organisations in the field of research increasingly recognise the importance of meaningful, diverse and inclusive involvement. There are many examples of how good practice in involving patients, service users, carers and communities in shaping research has made it stronger. Yet sometimes public contributors may have a mainly tokenistic role.
Even researchers with impressive academic qualifications, along with lived experience of the types of conditions or risk factors being studied, may sometimes find that their skills and knowledge are given less weight. This is especially common in areas such as mental health. Imbalances of power and status are common across society and affect research as well as other activities.
On occasions when people “involved” in research are treated as mainly ornamental rather than as active collaborators, it may not always be the fault of individual researchers or even team leaders. Sometimes budgets, staff availability and/or timescales are wholly inadequate, so that projects must rush to produce results of a “positive” kind which will get published in major journals or justify seeking further funding. There may be little space for shared reflection, even if this might lead to more relevant or robust research. Yet whatever the reason, as well as being unjust, this is a wasted opportunity.
Meanwhile, some researchers have also voiced concerns about going to the other extreme, in which the views of patient or public members count most and other kinds of expertise and experience are undervalued. This is probably a lot less common in practice – but, if it does take place, is problematic too. Journal articles about involvement occasionally imply that lay control is an ideal for health and care research, though other articles indicate that many contributors do not actually want this, instead preferring a more flexible, partnership-based approach.
This stems in part, I think, from taking out of context the findings of a 1969 article examining how Americans facing urban poverty, and also often racial inequality, tended to have little real say in projects meant to improve their situation. Despite democracy being admired in principle, in practice people in charge often keep a firm grip on control, despite various ways in which local people supposedly had an input.
Arnstein’s Ladder of Citizen Participation, which came out of this research, remains a useful prompt to thinking about power and who holds, or lacks, it. But applying this as a one-size-fits-all model for public services of every kind, in which the highest rung of citizen control is always best, is unhelpful, in my opinion. What is more, there may be varied ways in which power and status may be unequal, among as well as between staff and service users or local people; this may shift; and some people may be both.
Over the decades, I have been a carer and support-giver for family and friends with a range of needs (and strengths), picked up a few long-term conditions of my own, and belonged to overlapping communities facing stark health inequalities. I have also been involved in public bodies as a community or voluntary sector representative and, in turn, supported representatives. As well as gaining personal experience, understanding and opportunities to listen and observe, I have been part of formal or informal networks through which knowledge has been shared.
This has been hugely useful to me and others and, sometimes, a pointer to questions which should be addressed, issues taken on board, or “solutions” unlikely to work. Yet it does not make me an oracle with a mystical grasp of the correct answers in related areas of uncertainty (handy though this might sometimes be!).
While it is important to diversify who gets involved and encourage lived experience contributors, as well as staff, to think about equity, there may be gaps, especially since some people are too focused on survival to get involved in research. Public members as well as researchers may be swayed by assumptions widely held in society or by political or business leaders, even if wrong. And anyone can be mistaken or only partly correct. So, sharing power and openness to learning is usually valuable.
Research wholly led and carried out by people with relevant lived experience, on issues they prioritise can be valuable. But so can studies of other types, in which other researchers play a key part alongside people involved. When trust and mutual respect develop, so that disagreements can be aired and talked through, complex issues can be fruitfully explored together.
Ethical issues still need to be considered. Historically, explorers have not always been respectful of those whose lands, or lives, were explored; or, even if they were, their findings were sometimes used by others to exploit or dominate, not serve. Strong and diverse involvement is not a substitute for thinking carefully about the impact not just on participants, or communities studied, but also on those who may be affected by findings and recommendations.
Thankfully, there are many instances when researchers without lived experience, and people involved (regarded as neither ornaments nor oracles but partners in research), have developed knowledge which can reduce preventable suffering and benefit those in most need.
Read more about patient and public involvement at ARC South London.