Last week the Accelerated Access Review (AAR) interim report was released. We welcome the review’s acknowledgement that patients must be at the heart of any effort to improve access to innovative technologies, which was demonstrated by their decision to make the first proposition of the report “Putting the patient centre stage”.
However, this proposition is far less detailed and elaborated than others, particularly propositions four and five. This needs to be more than just lip service, and we will be strongly encouraging the review team to elaborate more clearly how they are proposing to strengthen patient voice at every stage of the innovation pathway.
In our response to the initial phase of engagement we told the AAR team of our support for the application of adaptive licensing pathways and early access schemes, with appropriate safeguards and surveillance, as a means of accelerating access to transformative medicines for patients with rare and genetic conditions. Consequently we are cautiously optimistic about the proposed accelerated pathway contained in proposition two of the interim report. How effective this is at improving access to innovative technologies for patient with genetic, rare and undiagnosed conditions will depend on how the “most promising products” are identified for access to this system and the extent to which it can cope with the evidence gaps that so frequently occur with treatments for small patients groups.
Proposition five is the most fully developed of the interim report, and is described as underpinning the other four propositions. It lays out a proposal for a new system architecture, involving a network of Innovation Exchanges located in Academic Health Science Networks, which link to a national level Innovation Partnership responsible for supporting the introduction of innovative technologies. It is not clear how this would fit within and interact with the already overly complex system for commissioning treatments for rare conditions. We look forward to the review team clarifying and expanding on how their proposed Innovation Exchanges and Innovation Partnership system would work in practice.
The interim report is still quite preliminary, and the review has a lot of work to do to flesh out their five propositions into some more concrete proposals, particularly in the earlier stages of the innovation pathway. In particular, there is very little engagement with the appraisal and reimbursement processes which we have raised our concerns with in the form of two Patient Charters (which you can see here and here). However, this does form a large part of the second stage of engagement, though reducing reliance on the Quality Adjusted Life Year (QALY) has been ruled out.
How can we make sure patients really are put centre stage?
We would encourage our members to get involved with the next phase of the review to help shape how these high level propositions will be put into practice.
The Review has reopened the engagement platform for the public, with new questions which you can find here. This will close again in January 2016. National Voices will be holding workshops to engage stakeholders – we’ll keep you updated when details of these emerge.
The Accelerated Access Review team are also asking groups to participate in a survey on the “attractiveness of different pricing and reimbursement schemes for the UK”. This closes on Friday 13 November 2015.
If you have any questions or comments about this work please contact our Policy Officer, Louisecreate new email.