The massive restructuring of UK clinical research according to new, local boundaries is a regular topic on this blog. My recent post about whether research was ready for the new localism prompted quite a response. I doubted then the willingness of new organisations in this transformation to involve the patient voice.
The associated engineering works to make change happen on this scale are significant. It is a credit to all concerned that – unlike London which you are lucky to be able to traverse at weekends because half the rail tracks are up – clinical trials and studies continue.
Nonetheless it is not easy, particularly for our colleagues trying to ensure public involvement is central to how we do things. After almost a decade of clinical research networks we have become adept at navigating round the equivalent of the wrong type of snow, leaves on the line and the odd elephant sleeping on the track.
I worry that as national networks transition into local networks cross-country travel will be more difficult. On the other hand a cause for optimism are the new alliances that can be built around the Local Clinical Research Networks (LCRNs) which will share the same local boundaries as Academic Health Science Networks and the Collaborations for Leadership in Applied Health Care and Research (CLAHRCs).
I would hazard a guess that the lead for this collaboration will come from local areas.
My experience of major change in many different types of organisations is that ‘head office’ can be stunned into inaction by the enormity of what is happening. It’s actions are often awkward, over-complicated or downright heavy-handed. Simply because the default position of the centre is to want to intervene and control rather than empower. It is ironic that while change is often sparked at the top it can be the last to enter the process of culture change and learn new behaviours.
To prove the point I heard yesterday that in the West Midlands a new public involvement forum has been created bringing together representation from the Academic Health Science Network (AHSN), CLAHRC, Research Design Services (RDS) and Local Clinical Research Network (LCRN). To quote Andrew Worrall, the Chair of the new forum and an outstanding patient leader, its intention is to:
‘ensure that during this period of transition and policy development in each of the organisations we should work on the development of a shared vision for patient and carer participation, involvement and engagement, (PCPIE), share best practice and jointly invest in and share infrastructure and resources where appropriate.’
The forum is called the ‘Public Involvement and Lay Accounatbility in Research (West Midlands)’ or PILAR for short and will show its public face for the first time at an event on 6th March which I am speaking at (I think). This meeting will be an opportunity to bring other partners together from the area. Andrew tells me that a critical factor in PILAR’s formation has been the support of the leadership across all the aforementioned organisations. But I have no doubt that this leadership focus has come about because of the lead shown by patients and the public as well. People like Andrew but many others.
In another example CLAHRC North West London are exploring imaginative and innovative ideas to design a more connected system for engagement and involvement. They are working with patient advisers to sketch out some basic ideas to enable better reciprocity – a mutually positive and beneficial exchange – between individuals and the many organisations in their patch. Initial ideas attempt to address the fact that people don’t live compartmentalised lives and their engagement may be dynamic and fluid across and between organisations and that they are not ‘owned’ by an institution. Watch this space on this one.
It sounds like the West Midlands and NW London are ahead of the game in beginning to get things in place to make public involvement in research work for local people. That is: leadership; clarity over function and; the structure or form to make it work. Perhaps the model will work for you too. Happy to give you the contact email for more information if you drop me a line with your contact details.
All that remains is to glue the many local parts together so that we still have a national focus where needed. That seems to be happening in terms of academic and clinical leadership. But not in public involvement. It is where the supportive hand of NIHR could make a real difference.