Putting the patient centre stage
The Accelerated Access Review (AAR) aims to speed up access to transformative drugs, devices and diagnostics for NHS patients. The interim report, published on 27 October 2015, sets out five main propositions which will form the basis of the review’s next phase of engagement; the first proposition is “putting the patient centre stage”. The next phase of the review will work with patients, carers, patient charities and other key stakeholders to explore the scope for identifying and codifying patient-led outcome measures. It will also develop ‘I’ statements that represent principles reflecting the patient voice across the pathway, including concerns relating to inequalities, safety, efficacy and transparency.
What are the ‘I’ statements?
Last week Hilary Newiss, Chair of National Voices and champion for patient and service user engagement in the AAR, announced the launch of an online survey on ‘I’ statements: how to give patients and service users a say at every stage of innovation. ‘I’ statements are statements that describe what is important to people who use services, from their perspective. The ‘I’ statements will provide a vision for good engagement which the AAR hopes will be used by all parties involved in developing new treatments and making these available to NHS patients, to inform the way they work and engage with people with ongoing health and care needs at every stage.
The statements cover four key areas:
- How priorities for research are set
- How people are involved in the research and development process
- Access to new and innovative treatments
- Shared decision making around uptake of such treatments
The AAR team wants to know whether the ‘I’ statements capture the things that matter most to you or the patients and service users you work with, whether the ‘I’ statements have struck the right balance between aspiration and pragmatism, and whether any important areas or statements are missing.
A set of ‘I’ statements will be published in the AAR’s final report, which is due to be published in April 2016. They will inform and guide the whole report, and form the basis of principles for future work in the area.
Why is this important for AMRC members?
At our annual conference this year, we heard from Sir Hugh Taylor, AAR Chair, that it’s crucial that patients are given a stronger voice at every stage of the innovation pathway and that getting that element right will direct innovation to the outcomes that matter most to patients and give further impetus to earlier trials and pilot products. We believe this is an excellent opportunity for you to have your voice, and that of the patients you represent, heard in this topical discussion.
What can AMRC members do?
The survey closes on Thursday 14 January. We would strongly encourage you to respond to the survey and share with patients, colleagues and others in your network.
More information on the AAR can be found here.