Last week, medical research charities among others hailed a series of Government amendments made to the Health and Social Care Bill. These place ‘a strong duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research and the use of research evidence.’
The amendments are in response to persistent lobbying; their underpinning arguments can be traced back many years, far beyond the initial responses to the Health White Paper in 2011 which presaged the publication of the Bill.
The need for them is pressing.
Yesterday, INVOLVE held an all-day ‘Introduction’ for our newest members. A number have emerging roles in the new Clinical Commissioning Groups (CCGs) in their area. The anecdotal evidence from these colleagues is that the vast majority of CCGs are not switched on to their role vis a vis health research whatsoever. In fact, it’s not just that they are not switched on, but that they are not even ‘wired’ in ways which will ensure they engage with this agenda on anything but the most basic level. That’s not good for those of us who see them as playing a crucial role in ensuring patients are supported take part in research. That’s why the legislative changes can help.
However, reflecting upon this last night, I couldn’t help but conclude that writing a new duty into law for the Secretary of State and others, only underlines the duty on all of us to make its intent a reality.
The simple days of command-and-control, of upward delegation, in making things happen in the NHS in a linear fashion are long gone as you know. The delivery of health and social care is now more diffuse than ever before. It is inherently more complex than commonly perceived (a perception amplified in popular tv shows harking back to a time long gone such as ‘Call the Midwife’).
We have to be smarter and cleverer and more creative to help engineer the change in culture we so desire. Not least in ensuring that ‘the system’ if I can use that term, does its level best to engage with, and ensure, patients can participation in research at whatever point they enter it.
It means paying more than a little attention to shaping the ‘demand-side’ of the equation or, if you prefer, to the application of theories about change management. Regardless, the bottom line is that it means empowering patients to approach their doctor, their practice nurse, a member of staff, about research.
Pushing this change through will have many elements to it. They will need to be pursued over a considerable period of time. Making sure NHS organisations and others uphold their duties is only one aspect.
In fact I would hazard a suggestion. It is going to be as much down to organisations who have successfully lobbied for the amendments mentioned above, shining a light and applying external pressure which wakes the system up. And part of that will involve them taking steps to empower their patients and supporters appropriately.
I’m looking forward to working with these and other partners inside and outside the NHS in my new role as NIHR National Director for Public Participation and Engagement in Research
We have a great opportunity, better than we have ever had before, to ensure the NHS lives up to its ‘research mission’ as people once used to call it. But our starting point must be that the duty falls on all of us to make sure this happens.