The divide between public involvement in research and service delivery

Yesterday I was on a visit to the West Midlands.  The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region.

Many organisations and voices were represented in the room.  The discussion was lively and, at times, challenging.  But one particular colleague turned what was a valuable meeting, into an invaluable one for me.  Coming from outside the world of research and representing the world of public engagement in services and care provision she rightly asked (I paraphrase): ‘What is this?  Is this a parallel universe?  Why haven’t you been part of our discussion in service delivery over the last few years? Where have you been?’

These remarks should not be taken as an indictment of our colleagues in the West Midlands: I have heard it in many other places.  But it was a reminder, if ever we needed one, that often we need someone from outside our world,  to hold a mirror up to ourselves so that we can see who we really are.

On the train home I remembered another anecdote from a colleague some months back.  Again, it was in the context of a conversation about the need to bring researchers and care staff together more often to learn from and support one another.  She recounted to me that when she had tried to do this, the greatest reluctance was shown by her colleagues from the world of research.  Not those from service provision.  Research is research, and care is care, and ne’er the twain shall meet right?

Well, of course not.  But the point is that while we often talk a good game in public involvement in research about working with our colleagues in service delivery.  All with the aim of making research a bigger part of their thinking and vice versa.  We don’t follow it through. In fact, maybe we are just that little bit too comfortable in our ‘research’ silo.  And that might mean we are giving off the impression that we are too posh to get our hands dirty in the world of service provision?

This is not a new issue by any means.  I dug out the notes of a discussion on this topic from the INVOLVE Symposium in 2014.  Here they are, along with some of the suggestions for breaking down the boundaries (they can also be found on INVOLVE’s website here):

Discussion topic: What is INVOLVE’s role in bridging cultural barriers between involvement in research and service delivery? Issues raised:

  • Focus needs to be on how research contributes to service improvement. How do people involved in service delivery access research? How to interest them in research?
  • Challenge of different timescales in research and service improvement.
  • Realism about how much individual research projects and public involvement can deliver.
  • Researchers generally have bought into engagement not involvement. Conflation of the two.
  • Capacity issues in commissioning/service delivery. Practicalities more important barriers than cultural or language issues. New structures/plethora of guidance on PPI etc. PPI on the service side has fragmented as services have fragmented. There is no service side equivalent of INVOLVE. Trickle down from NHS Constitution to “shop floor” will take time.
  • Need to convince serviced providers that research will improve services, benefit patients and staff.
  • Lessons from research can be translated to service development.
  • Researchers not focused on dissemination. No money/status in implementation.
  • Lots of patient involvement in services we don’t see or understand.
  • How to ensure patients/patient groups have access to new research?
  • How to ensure patients/patient groups actively involved in service development can access learning and development opportunities available to those actively involved in research? Can we share what we have?
  • How do people currently use evidence of research outcomes to influence service provision?
  • Who has responsibility for ensuring research outcomes are shared with patients/the public, Clinical Commissioning Groups (CCGs)?

Discussions on what can INVOLVE do included:

  • Focus on how research can benefit health/how involvement in research can benefit.
  • Work with NHS England strategically – barriers are systemic not cultural divide. Opportunity to change this. INVOLVE can step in. Strategic link between those driving PPI in research and service delivery.
  • Simple local diagrams of new structures in service delivery and research, with simple explanation of organisational roles.
  • INVOLVE to facilitate strategic discussion across NIHR, NHS England, Health Education England.
  • Dual track – encourage linkage/mapping at both national and regional/local levels.
  • INVOLVE to signpost good local practice in joined up PPI working/shared learning.
  • Recognise key drivers on service side (key NHS Trust targets, etc)
  • Influence research commissioning to promote dissemination, engagement, implementation.
  • Engage third sector re research outcomes.
  • Look at effectiveness of dissemination/impact strategies.
  • Build on plain English work to help describe research as relevant, getting research into patients’ hands, demystifying research.
  • Advocate for participatory research.
  • Advocate for using existing research not just doing new research.
  • Raise research mindedness in service PPI.
  • How could INVOLVE help AHSNs and CLAHRCs do all this?
  • Look beyond healthcare involvement to learn how others involve/engage the public?

The discussion focussed on work that INVOLVE could do.  But, frankly, many of the things on the list should not be reliant on INVOLVE.  Nor can we use the fabulous work of our CLAHRC (Collaborations for Leadership in Applied Health Research and Care) organisations in trying to overcome these barriers as an excuse for doing nothing ourselves.  The onus is on us all to try and change the culture.

I know it goes both ways.  But perhaps our first move should be to open the door to our colleagues in service delivery.  And if they don’t come to us, we should go to them.

Patients, carers and the public would expect it of us I think.

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