Today we have published a report that has made a series of recommendations for how to improve clinical research for participants.
Earlier this year we carried out a project in partnership with members of the public, researchers and academics from the University of Lincoln, and asked more than 400 people about their experiences of health and social care research.
The aim of the project was to find out what researchers should do to make sure that the people who take part in clinical research, and those who will be affected by the outcomes of research, are the focus.
We decided that research that works in the right way for people should be called ‘people-centred’ research.
Find out more about the People-Centred Clinical Research project.
Recommendations for system-wide change
The report shares data from a survey carried out in 2023, as well as feedback from groups who we had conversations with.
We found that there were barriers that can stop research from being people-centred, as well as things that can help. We grouped these under four headings and made 19 recommendations for actions that researchers need to take.
19 recommendations
Possibility – make it possible for people to take part
1. accessibility
2. available opportunities
3. cost and inconvenience
4. exclusion and inequity
5. information about research
Trust – treat people well and with respect
6. fears about safety, confidentiality and disrespect
7. care and recognition
8. communication
Purpose – do research that is meaningful
9. co-production and collaboration
10. research designs
11. impact
12. engagement
Culture and capacity – be people-focused
13. mindset and attitude
14. advocacy
15. system capacity
16. system support, administration and leadership
17. ethics processes
18. training development and skills
19. funding and resources
We hope that that researchers and research organisations will use the findings of the report to take targeted action to create the right environment for people to take part in research, as well as supporting researchers to do people-centred research.
Hallmarks of good people-centred research
The report also introduces nine hallmarks that research and researchers will show if they are doing good people-centred clinical research:
- reliable, honest and open
- caring and respectful
- appreciative and thankful
- making a difference
- working in partnership
- representative and fair
- as simple as possible
- giving choices
- using great communication
If the 19 recommendations are put in place, research and researchers are more likely to show these hallmarks.
The Health Research Authority is encouraging people involved in health and social care research to use the hallmarks to help review their practice. They can also share them with research participants so that anyone thinking about taking part in research knows what to expect.
Kate Greenwood, Senior Improvement Development Manager, Health Research Authority“The People-Centred Clinical Research project brought together members of the public and the research community to work together to find out what good research practice looks like.
“If we want research to make a difference, we need to create an environment that helps and values participants and the research teams who are doing it.
“The hallmarks we have created together, alongside the recommendations for change, are an opportunity for us to make a real change to the way health and social care research is carried out in the UK and put people and their experiences back at the heart of research.
“I’m really pleased to publish the work we have done, and I hope the research sector will take the time to read the stories and experiences people have shared with us.
“The Health Research Authority has already started to make changes based on the findings and we are calling on the research sector to use the report to identify where they can make changes too.
“I want to say a huge thank you to everyone who has contributed to the project, particularly the members of the steering group and those who gave their valuable time to talk to us and share their experiences.”
The full report for the People-Centred Clinical Research project is available on the Health Research Authority’s website alongside an executive summary and free resources for researchers to use.
The People-Centred Clinical Research project is part of the UK Recovery Resilience and Growth Programme (RRG) set up to deliver the UK Vision Saving and Improving Lives: The Future of UK Clinical Research Delivery. The RRG programme is a partnership of research organisations led by the Department of Health and Social Care, working together to improve clinical research delivery across the UK.
Making research more people-centred is one of the key ambitions outlined in the vision.
The People-Centred Clinical Research project is one of the key actions to address this ambition, and is highlighted in the Government’s response to the recommendations made by Lord O’Shaughnessy review of clinical trials in the UK.