Health and social care leaders unite to improve public involvement in research

Funders, regulators and research organisations who play an important role in the UK health and social care research have come together, working with members of the public, to sign up to a bold, new shared commitment to improve public involvement in research.

The Academy of Medical Sciences has joined with the Health Research Authority, the National Institute for Health Research and a host of organisations across the UK to bring about changes which will drive up standards in health and social care research.

They include: the Academy of Medical Sciences, the Association of the British Pharmaceutical Industry, the Association of Medical Research Charities, Chief Scientist Office, Health and Care Research Wales, Health and Social Care Northern Ireland, Medicines and Healthcare products Regulatory Agency, the National Coordinating Centre for Public Engagement, NHS Research Scotland, Universities UK and UK Research and Innovation.

The statement, signed by leaders at each organisation, reads:

"Public involvement is important, expected and possible in all types of health and social care research.

Together our organisations and members fund, support and regulate health and social care research. This statement is our joint commitment to improve the extent and quality of public involvement across the sector so that it is consistently excellent.

People have the right to be involved in all health and social care research. Excellent public involvement is an essential part of health and social care research and has been shown to improve its quality and impact. People’s lived experiences should be a key driver for health and social care research.

When we talk about public involvement, we mean all the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community. Excellent public involvement is inclusive, values all contributions, ensures people have a meaningful say in what happens and influences outcomes, as set out in the UK Standards for Public Involvement.

Working together we will support the research community to carry out excellent public involvement.  We will provide or share guidance, policies, systems, and incentives. We will:

• listen to and learn from the people and communities we involve and apply and share that learning
• build and share the evidence of how to involve the public and the impact this has
• support improvements in equality, diversity, and inclusion in public involvement
• promote the UK Standards for Public Involvement

We will embed this commitment into the decision-making processes of our organisations."

You can find more from each of the signatories – and what they will do - by clicking on the links below: 

• The Academy of Medical Sciences  
• The Association of Medical Research Charities  
• The Association of the British Pharmaceutical Industry  
• Cancer Research UK
• Health and Care Research Wales  
• Health and Social Care Northern Ireland  
• Health Research Authority  
• Medicines and Healthcare products Regulatory Agency  
• National Coordinating Centre for Public Engagement  
• National Institute for Health Research  
• NHS Research Scotland  
• Universities UK  
• UK Research and Innovation

Lord Kamall, Minister for Technology, Innovation and Life Sciences, said:

"Today’s sector-wide public commitment makes a strong statement that the organisations signing up, led by the Health Research Authority (HRA) and National Institute for Health Research (NIHR), recognise and welcome the importance of involving the general public in health and social care research.

We want the UK to be one of the best places in the world to invest in a life-science business and to deliver research that benefits everyone. The key to this is to develop stronger partnerships between research and patients and the wider public. Involving the public in research will help researchers conduct better studies that are open to everyone. Such inclusive research will enable the UK to deliver more world-leading, life-changing breakthroughs in science and improvements, which in turn will improve the health of our nation."

Dr Matt Westmore, HRA Chief Executive, said:

"Excellent public involvement is an essential part of excellent health and social care research. It improves research and people have a right to be involved.

This shared statement, developed with patients, research participants and leaders in health and social care research, will ensure public involvement is embedded across the health and social care research system.

For the first time the entire research system is sending the same strong message. That public involvement is always important, always expected and always possible. The evidence is that better research results from involvement, and better research delivers benefits for patients.

It also says that together we are stronger – the 14 influential leaders in health and social care research are stronger together - the public and the research community are stronger together. And together we will bring about real change."

Roger Wilson, HRA public contributor, said:

"This has been an outstanding piece of work and it has been a real joy to be involved with it. I’d like to thank the HRA and NIHR for their leadership of the project and for the consideration and care shown to ‘public contributors’. The co-creation of this shared commitment to public involvement has been a real partnership. Now we need to ensure that others across the health and social care research system can recognise and adopt this commitment to public involvement."

Professor Lucy Chappell, Chief Executive, NIHR, said:

"Partnering with patients, service users, carers and communities is absolutely fundamental to improving research. 

We're proud to have worked with health and social care leaders and public contributors to develop this strong statement of our ongoing commitment to public involvement. We already have a track record in this area but we are committed to supporting researchers to become more skilled and confident in partnership working and to making it more straightforward for patient and public members to work with us.

‘The benefits are clear – by involving patients and the public in our research from the outset, we plan and deliver studies that are relevant and important. This approach ensures that people’s perspectives and lived experiences of health and care are heard and acted upon."

Ifeanyi Sargeant, NIHR public contributor, said:

"Ultimately, research aims to ask the right questions to get answers for problems and challenges we face. But how to know which questions to ask and what is most important or meaningful to address for people with health or social care needs? The only way is to ask the people affected what they struggle with and what they need. That's why public involvement in research - right from the initial ideas through to practical implementation - is vitally important. If we don't ask the right questions, then we can never hope to deliver the right answers and solutions that can improve lives."

Richard Torbett, Chief Executive of the Association of the British Pharmaceutical Industry, said:

"The UK faces an immense challenge in rebuilding a sustainable NHS post-pandemic that is able to deliver world class patient care and attract global research investment.

That cannot happen without collaboration between the life sciences industry, patients and the public, which is why we are committed to embedding patient and public involvement at the heart of research." 

The shared commitment aims to address the gaps identified in leadership and communication by bringing patients and public contributos and leaders in health and social care together to actively set out the importance of public involvement in all health and social care research with the ambition of delivering better health and social care.

The Academy has a long-standing history of working with patients and the public, including through our Departure Lounge project on death and dying, and public dialogues on health data and the use of evidence. During the pandemic, the Academy quickly recognised the vital role of public and patient voices to guide our COVID policy advice. We convened a patient and carer reference group to inform their work on winter COVID pressures in 2020 and 2021, and worked with service users and patient representatives to look at the potential impacts of the pandemic on mental health. We also worked with creative partners and young people based in three continents to support the development of an online comic, and hosted a FORUM workshop to look at how the NHS, industry and academia could work together to keep public and patient involvement on the agenda.

Other organisations are invited to sign up to the statement. For more information, please email Holly Rogers, Head of Engagement at holly.rogers@acmedsci.ac.uk.