Authored article

How should we involve patients in research and innovation?

Hilary Newiss, Chair of National Voices, asks for your opinion on how to give patients and service users a say at every stage of innovation.

Hilary Newiss, Chair of National Voices

Earlier this year, the Accelerated Access Review appointed me as champion for patient and service user engagement. This workstream recognises the vital role that that patients and service users play at every stage of innovation - from defining priorities and desired outcomes for research to driving adoption of new treatments across the system. This importance was further emphasised in the Review’s interim report.

Building on what we’ve learned so far, we’ve launched an online survey on how to give patients and service users a voice at every stage of research and innovation.

The survey draws on experience gained from National Voices’ Narratives for Person Centred Coordinated Care. This project has shown that ‘I statements’ are a powerful way of creating a vision of change that brings together diverse groups of stakeholders. ‘I statements’ are statements that describe what is important to people who use services, from their perspective. For example: if a new treatment has been made available, I understand who is able to access it and how.

So our new survey is based on draft ‘I statements’ that define what patients want from the system in terms of their involvement in, and access to, transformative health care. The statements cover 4 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

They include draft statements such as:

  • I know that people like me are involved in setting priorities for research
  • I can easily find out about relevant research and clinical trials and get impartial and accessible information and advice about taking part
  • I know that I will be supported to understand all of the potential risks and benefits of accessing a new and innovative treatment and to put this into the context of what matters most to me

We want to know:

  • do the ‘I statements’ capture the things that matter most to you or the patients and service users you work with?
  • would they also resonate with other partners involved in innovation?
  • have we struck the right balance between aspiration and pragmatism?
  • is there anything we have missed?

The survey closes on Thursday 14 January, so please have your say by then and encourage people within your networks to have their say, too.

You can also stay up to date with Review developments by visiting our engagement platform.

We’ll publish a final set of ‘I statements’ in 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 this area.

I would again like to thank everyone who has contributed to the Review so far by helping develop the statements that form the new survey and sharing examples of current good practice in involving people in healthcare innovation. Together we can and will put patients and service users at the heart of the innovation pathway. Thank you for your help in making this happen.

Published 11 December 2015