Having sensibly bought itself another 6 months to do the work, last week the Government’s ‘Accelerated Access Review’ published its half-term report. Headed by Sir Hugh Taylor the review is looking at how to get new treatments and technology in the hands of patients quicker.
It is an important review and all the better for the work that National Voices has done to ensure patients and the public have been involved in the discussions so far. There is still time to make your views known and I urge you to do so. The louder our voice, the more likely it is that the review will make a difference to the lives of patients. Click here for more details. Comments can continue to be submitted until January 6th, 2016.
In the meantime, here are some personal observations about the report in general and, more specifically, on its thinking about the role of patients and the public.
- The report reflects the breadth and depth of the review’s inquiry. I still feel that the Review is trying to solve all the world’s problems in one go. It started off with a set of terms of reference longer than the average patient consent form and it hasn’t quite freed itself from this. On the other hand, its thoroughness is to be applauded; there is much of merit outlined under each of its five propositions.
- If the review emerges with four or five ‘flagship’ recommendations that have political impetus and funding behind them – and that focus on the key question of ‘innovation and diffusion’ from a patient and public perspective – then the review will have been successful. If it falls into the trap of attempting to placate the many interests around the table it will end up with a shopping list that will have only a marginal impact.
- Think of it like this. The UK has built a pretty good Formula One racing car in health research system over the past ten years. It performs well and is competitive. Issues arise where the ‘rubber meets the road;’ that new treatments and technology are not being adopted by the NHS. Does the car need to be re-built from scratch to solve this problem? Or is it about changing the tyres to suit the conditions?
- It is important that the review’s first proposition – and the opening chapter in the review (Pages 11-12) – is entitled ‘Putting the Patient Centre Stage.’ That’s an essential statement of principle. As with all the chapters in the report, this one is densely written and not always very easy to understand (lots of ‘technical’ language) – the authors will need to address this if the final report is to resonate with a wide audience. Nonetheless it contains the kernel of some good ideas which, together, represent a way forward. They will be all the better for the further refinement that the review’s extended timeline will allow. For instance, I like its proposal for ‘I’ statements that ‘represent principles reflecting the patient voice across the pathway, including concerns relating to inequalities, safety, efficacy and transparency.’ But they must be statements to which organisations and their staff are held accountable. If not they will be quickly discarded at the roadside. Perhaps some further thought needs to be given now to how their adoption can be incentivised and success recognise as this will help to ensure the innovation process is designed with the patient in mind.
- I would like to see more emphasis on how diverse communities and young people can be more involved in innovation and diffusion. Having spent Saturday with a number of people from NIHR’s GenerationR young persons advisory groups they have a lot to give this agenda – not least as possible early adopters of, and ambassadors for, innovation.
- There is a welcome emphasis on the need for our health innovation system to be better designed around patient priorities and patient outcomes. But the final review needs to be more assertive about the fact that patients and the public need to be part of the decision-making process by which these are identified and then followed-through. Many organisations profess to be guided by ‘patient need’ but do little to change their governance or internal ways of working so that patients and the public are partners in how decisions are made.
- For this reason while I understand the review’s focus on improving ‘system architecture,’ I am deeply suspicious of what this will mean in practice. Too often the outcome of system change for patients and the public feels no different to that which went before: a sense of being excluded from the very organisations which are supposedly working in their interests. The proposed local ‘Innovation Exchanges’ and national ‘Innovation Partnership’ – both of which are good ideas – must be run as a true collaboration between patients and other partners (Pages 22-23). I hope they will also be places where innovation will occur, not simply where information is exchanged. There are some powerful examples of this from around the world (as I have written on this blog before).
- Generally there is much in the review’s fourth proposition around ‘Galvanising the NHS’ that makes sense and seems to be based on a sound analysis of the issues. The focus on commissioning, the recognition of the need to provide incentives and funding, the highlighting of how health and social care organisations should be made accountable for adoption are all sound paths for the review to be pursuing in the months ahead. If only NHS England had got its act together three years ago, we might have been some way along this route already!
- It might seem strange given my criticism of Academic Health Science Networks (AHSNs) in the past, but I am pleased they are given strong backing in the interim report. There is no doubt that AHSNs have come a long way in the past couple of years and that this improvement includes what they have been doing in public engagement. But the final recommendations of the review could be helpful in re-booting AHSNs. If so, I would also like to see them reconstituted so that patients and the public are truly involved in how they make decisions. Also to be specifically funded and incentivised to co-design innovations with patients and the public.
- For all these positives, I have a nagging doubt that the review at this stage lacks a compelling proposal for putting power in the hands of patients to drive change. Perhaps it is simply about putting knowledge and information in their hands as ‘Which?’ did In 1959, thereby revolutionising society’s view on what it meant to be a consumer. However, this is where you can help by continuing to provide your views and comments to the review…..see above!
I must admit, when the ‘Accelerated Access’ review was first announced I thought it was a car crash waiting to happen. But the interim report suggests that Hugh Taylor’s team has successfully negotiated the first few corners and a tricky chicane or two. They still have a long way to go of course. And for me there remains an unresolved tension between the Government’s preoccupation with ‘speed-to-market’ (note also the Saatchi Bill agenda) and issues of quality and informed access for the end-user. But they might yet take the chequered flag.
[I am a contributor to the Accelerated Access Review]
