Musings on the role of senior academics in supporting public involvement in health research in universities and institutions

Author Kym Lang
Posted 2019.04.17 Comments 0
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his blog was originally inspired by a passing reference I saw in a research proposal. In talking about their plan for public involvement the applicants referred to a ‘Senior Academic Lead for Patient and Public Involvement…’

It got me wondering. OK, initially, it spurred me on to sit down at my computer keyboard and huffily hammer out protestations about the rights and wrongs of there being such a person. How could such a thing happen I wanted to know? Is this really advancing patient voice in the way we imagined?

Until another voice broke through my grumpiness. A voice that – as it usually does at times like this – took on the same tone as a member of my family having a go at me. It said – ‘You control freak. Call yourself open-minded. What’s wrong with you?’

Thank goodness for that voice. Because we should be thinking of ways of supporting and making allies of senior academics in making public involvement and engagement happen. Not just in their own research but across institutions as well. So that it is part and parcel of their culture. So that the wider health research system changes as well. In any case, to coin a phrase, some of my best friends are academics! Which is true. 

NIHR has long signalled the importance of its Senior Investigators (SIs) in supporting public involvement. SIs are leading researchers in their field but also fulfil important roles in their organisations, the NIHR, and across the health research system.

Like every other applicant for NIHR funding these senior researchers have to say how they will support public involvement when they apply. For some this is challenging. But then I would also find writing a science proposal challenging.

If and when they are appointed investigators get a small budget to support their role. This has recently been increased by NIHR with a direction that they use it to support public involvement among other things. It’s not much money. But it can be the difference between something happening or not. A few years ago INVOLVE published a great little document with personal stories from Senior Investigators about how public involvement made a difference to their work.

Having stopped myself mid-rant I remembered this booklet and reflected on the ways in which the senior academics I most admire have helped advance and promote public involvement.  Broadly speaking each and every one has been instrumental in advancing public involvement:

– Leading by example in running research studies where patients, carers and the public are partners, where such involvement is purposeful and meets or hopefully surpasses best practice, where it is openly reported and celebrated.

– Encouraging and nurturing the right mindset within their immediate research team by ensuring members get regular opportunities to develop their understanding of involvement; where they feel able to innovate and learn.

– Asking questions of – and where necessary challenging – colleagues who seem dismissive or reluctant about the value of public involvement to research including connecting them to sources of help and expertise.

– Being an advocate behind closed doors with other academics and senior leaders. On Governance Boards, in senior executive groups. All with the aim of opening these conversations up to a plurality of voices and perspectives and improving the quality of decision-making therein.

– Creating the right environment in which public involvement can thrive. A good climate for public involvement is one in which there is time to develop relationships, investment that supports its development, a tone and style to the work which is respectful and treats patient partners as equals.

– Ensuring that public involvement and engagement are seen as necessary and important priorities and that appropriate resources are allocated to it at both a project level but also across institutions.

– Challenging patient partners to also think differently, to learn, to improve, by providing good feedback and being open to the same.

If this is what a ‘Senior Academic Lead for Public Involvement’ is about then all well and good. And if I had to choose any one of the above over all the others it would the ability to create the right environment, a focus on being inclusive and ensuring mutual respect among all partners. Get that right and anything can happen is my experience.

I have recently been working with one such colleague on a research proposal who has done just that; setting an expectation from the very beginning, pushing us 24/7 with  ‘Can we..’ ‘Should we….’ ‘Could we…’ It was inspiring to be urged on like that. A few weeks ago I facilitated a meeting of the patient advisory group for the British Periodontology Society. The group has come a long way in three years. From its early days of producing videos about patient experience of gum health to members of the group now chairing sessions at the annual meeting and being one of the pilot projects for the UCL Centre for Co-Production. It would not have got there without the advocacy and support of Professor Ian Needleman. Those reading will undoubtedly have examples of their own. Their leadership and willingness to champion public involvement is a cause for celebration.

Nonetheless, if we are going to see the creation of such roles it is only fair for us to ask what they mean in practice. Also, what such roles says more generally about the advancement and promotion of public involvement and engagement in health research.

Should academic prowess really be a prerequisite for holding such leadership positions? If so, why? Are such ‘appointments’ based on an appraisal of the criteria or hands-on skills and experience in doing involvement. If not, why not?  What scope is there to adopt innovative practices in keeping with involvement or co-production principles such as academics sharing the role with lay people. Or is there a hidden agenda here and an attempt to seize back the initiative to satisfy more conservative impulses.

The immediate consequence of this is that I suspect good people with little or no academic background but expertise that is more suited to playing such a leading role in institutions are overlooked. Advancement is difficult. It is demoralising for them, their colleagues and the community around them.  What signal are we sending? Particularly in this era when we are supposedly creating ever-wider partnerships.

A more serious concern is what might be going on behind such decisions higher up in an organisation’s hierarchy and what this means for the wider community. As institutions battle against ever-greater pressures with funder requirements on public engagement being just the most recent, who can blame them if they take at best a knee-jerk and at worst a highly cynical response. Am I the only one who has sat in so-called ‘high level meetings’ about public involvement strategy where the conversation has really boiled down to how to get the words in the right order and in the right places so that grants can be won.

In which case we must look to funders, regulators and others to create the right environment in which all academics feel they can work differently with patients, carers and the public. Regulators need to set clearer expectations about public involvement, why it’s important and evaluate what’s happening across the research system. Funders need to back up their requirements on researchers with the promise of serious resource and time to support the development and implementation of public involvement. Research England could do more to encourage the right university behaviours through the Research Excellence Framework (REF). Institutions themselves need to think more strategically about co-ordinating efforts across departments to create the right environment for involvement and maximising the impact of in-house skills rather than seeing it as just another box to fill in an application form. Co-producing research should become part of the core curriculum for NIHR’s new Academy and other initiatives such as ‘Team Science.‘ Bodies such as ARMA (the Association of Research Managers) need to also ensure that research managers have the knowledge and skills to support academic colleagues.

Perhaps at the end of the day it points to the need for a complete shake-up and shake-down across health research, a meeting of minds. Have we exhausted the limits of a public involvement approach which is focused on mechanisms and processes? How do we move to one which is more value-driven and meaningful? What should be our investment choices for involvement if we want to see outcomes from public involvement that drive better health.

So, what of the Senior Academic Lead we spoke of earlier? Frankly, I hope they are fantastically successful. For at the end of the day perhaps it is as simple as one of my favourite quotes about leadership and reading: ‘Good leaders read. Leaders don’t have time to read.’ In my view:

Good academics involve the public. Academics don’t have time to involve the public.

Have a great break over Easter everyone.