The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times.
I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent phone signal when such momentous events occur. On this occasion I was taking part in the Third NIHR Experimental Medicine Research Training Camp; a three-day residential meeting where over 60 NIHR doctoral students were learning the art of science communication. By their own confession they were taken out of their comfort zone. No more so than when they had to test their ideas in front of our excellent lay advisory panel. It forced them to think differently, to re-interpret their knowledge and expertise from a public and patient viewpoint. But the outcome in terms of their plans and ideas was superlative.
So what about the NHS Commissioning Board Draft Mandate from the point of view of public and patient involvement in research?
Unsurprisingly most attention has been drawn to page 26 of the Mandate headed’Promoting growth, research and innovation’ which looks at the role of the Board in promoting research by:
- Working with research funders
- Improving adoption and spread of new technologies
- supporting patient participation in research
Objective 17 and associated Annex B set out more precisely how this will be achieved and measured. The commitment to measure increasing patient recruitment is important. It is my view that this data should not only be about participation rates (already available through the clinical research networks), but also the extent to which patients are being offered the opportunity to take part in research (a possible role for the Care Quality Commission (CQC) through its annual patient survey). Together, these measures would tell us much about the extent to which the NHS is realising its duties in terms of research and patient choice.
For what it is worth, my own view is that the real game-changer in the Mandate when it comes to participation, falls within the ‘Choice Framework’ set out in Annex D. For this begins to set – for the first time and in some detail - the expectation that patients should be offered the opportunity to take part in relelvant and appropriate research as part of their care and treatment. It gives them and us license to challenge the system to make that choice a reality. As will the reviewed and renewed NHS Constitution when it comes out in draft form this autumn. Or I hope it will anyway!
The less satisfying aspect of the Mandate is the weakness of its statements on public involvement – as National Voices has already pointed out. In fact, it is very poor indeed. I already have a growing sense of unease over the new corporacy which may be creeping over some Clinical Commissioning Groups (CCGs) as they tackle the issue of public involvement. A number of CCGs are clearly in the search for those with specialist expertise and skills, as opposed to finding those who can reflect and articulate the patient voice. Others, on the other hand, are doing their best to get it right. But it is difficult to get a cohesive picture of what is happening because the signals are intermittent and often broken-up.
So I would say this. It is important that we respond to the consultation on the Mandate to support and strengthen its statements about patient choice and research. But equally important is to hear people’s experiences about what is happening with public involvement locally, good and bad. For we must make the case that, in order to meet its objectives, the NHS Commissioning Board has to ensure a better foundation for public involvement than it has thus far.
Only if we provide space for patients to challenge the system will we see improvements in the way that care and treatment is provided and people’s choices honoured.