Creating an NHS for all: the importance of increasing public involvement in research

The past few years have shown how vital research is to meeting the health challenges facing our society. Research is the foundation to transformational changes in healthcare, and, fundamental to the continued advancement in patient care and outcomes.

Today NHS England signs up to the Shared Commitment to further public participation in research. This shared commitment enables the health service and our health and care partners to work collaboratively to increase, good practice involvement, to make a difference together.

The NHS Long Term Plan sets an ambition for 1 million people to be registered to take part in research by 2023/24. In 2019/20 100% of NHS Trusts and 50% of GP practices were research active, recruiting over 725,000 patients into NIHR Clinical Research Network studies.

However, for research to be as effective as possible, we need to do more than recruit patients to research trials. We need to ensure that people with lived experience are fully involved in the research process from the outset. This includes working with people to develop trial protocols, design delivery, gathering evidence of effectiveness and shape the education and information resources around the trial. Excellent public involvement has been shown to improve the quality and impact of health and care research.

Meaningful public involvement enables research:

  • is clear about what matters to patients, making the research outcomes more relevant to people and communities.
  • is shaped by people with lived experience, ensuring trials are more accessible and adapted to people’s needs,
  • involved patients from communities that are under-represented in research, exploring ways to improve research approaches that are culturally appropriate and fully inclusive to all,
  • improves visibility of research across patients, communities, and the charity sector, supporting greater research activation and dissemination of findings.
  • builds transparency and public accountability across the research pathway, from funding prioritisation to delivery.

Those taking part in research are often not representative of our society. We need to ensure that we involve a diverse range of people and communities in shaping research. Many of our diverse communities experience additional barriers to taking part in research, including economic factors,  language or location and cultural or religious factors can play a role.

It is by involving people from diverse communities in our research development that builds effective research, that is accessible to everyone. That, in turn, ensures our research outcomes are the best that they can be, helping us to develop services and treatments that meet the needs of all.

Lindsey Hughes, Director of Research and Engagement, NHS England.