Who are the experts? Reflections on public and patient involvement in research: A blog by Harriet Cooper, PhD Student in the PPI Research Theme
Who decides what a programme of rehabilitation should look like, when someone becomes disabled? When a child or young person is diagnosed with an impairment, does that child, alongside his or her caregivers, play an active role in shaping treatment decisions, or is this simply the role of the doctors and therapists? Does lived experience inform healthcare practice? Is there a place for the perspectives of disabled healthcare professionals? These are the kinds of questions that will be foregrounded in my CLAHRC-funded research project, which is entitled ‘Rights-based Rehabilitation: A qualitative research project co-produced with disabled people’. Funded within the CLAHRC’s ‘Public and Patient Involvement’ research theme, this project will take shape in collaboration with a project advisory group of disabled people who have been through rehabilitation.
I came to this research project with a background in medical humanities, a relatively new field which puts medicine, society and culture into dialogue with each other. In my own work for the PhD I recently completed at Birkbeck, University of London, I have focused on the representation of disabled children in literature, on film and in the media. How do we see disabled children in contemporary British culture? What kinds of assumptions do we make about their lives, and how are these formed in relation to dominant and uninterrogated cultural anxieties about disability as a ‘problem’? In what kind of cultural context, and on what basis, do we judge which kinds of medical treatment and care are in the best interests of disabled children? Do healthcare professionals seek to imagine what rehabilitation is like for disabled children? And when, if ever, are disabled children asked for their opinion about what kind of treatment would help them? These are just some of the many questions that interest me, and which I have considered in relation to my readings of filmic and textual depictions of disabled children.
As someone who is new to public and patient involvement in health research, what I find most striking and most exciting about the people working in this field is their commitment to asking unsettling questions which have the potential to make an important contribution to the institution of medicine. Perhaps the most interesting of these unsettling questions is: who are the experts? One of the major achievements of the disability activism movement has been to draw attention to the fact disabled people are often spoken for by ‘experts’ hailing from health and social care institutions. In relation to disability research, public and patient involvement is about recognising that disabled people are experts on their own lives – they are ‘experts by experience’ (Shakespeare, 2015).
In spite of the efforts of those working in public and patient involvement, there are persistent issues and tensions that remain difficult to resolve. One of these is the hierarchy reinforced by funding structures: a lay researcher is, very often, financially subordinate to university researchers, whose salaried positions demonstrate what is really valued as ‘expertise’. Perhaps it is right that tensions persist: perhaps it is right that this remains a ‘messy’ area, because it may be a sign that we (the academy) are trying to grapple with the big questions rather than undertaking public and patient involvement in a tokenistic way in order to have a smooth, untroubled research life. (And when I say ‘we’, I can’t help but mean ‘the academy’ and I include myself – aware of my privilege – in this group, although, as someone with hemiplegia diagnosed in childhood, I simultaneously belong to the group that is to be researched in this project). When these big questions are taken seriously, it seems to me that we come up against major philosophical questions about the function, purpose and ownership of medical knowledge in society. What exactly is ‘expertise’, anyway, and how the meaning of this term policed by the academy, by the media, and by policymakers? It seems to me that if different interest groups can work together on these questions, we stand to build healthcare institutions and systems that are more robust, reflexive and open.
Shakespeare, T. (2015). How do we break down barriers to access for people with disabilities? The Guardian, 4 November. http://www.theguardian.com/society/2015/nov/04/disabled-people-breaking-barriers-access-solutions [Retrieved on 11 December 2015].