Improving clinical research so that more people can take part in ways that are better for them.
Clinical research aims to find out more about an illness, condition, treatment, therapy or care by directly including people in a research project. This sort of research is vital to making health and care better and it is important that as many people as possible can take part in projects about their treatment or condition.
Lots of people are involved in clinical research studies and trials, but we know there are lots of people who have still not benefitted from good clinical research.
We want to change this.
The People Centred Clinical Research project
The People Centred Clinical Research project aims to improve the way clinical research happens in the UK, so that:
- there are more opportunities for more people to take part
- it is better for people who do take part
- there are better health and care decisions
- there is reduced research waste
To do this:
- we are looking at what the existing research literature says
- we are asking people for their views and experiences
- we are sharing what good looks like and making recommendations to help changes in practice
What do we mean by being people-centred?
We think that being people-centred means asking people what matters most and working on solutions together.
For this project we want to ensure that what matters most to the people who take part in clinical research, and the people who will be affected by the outcomes of research, are central to how it is done.
What makes research people-centred?
This is what we want to find out through our project.
Our project steering group has reviewed existing research in this area we have identified lots of things that are important to people when taking part in clinical research.
We have grouped these things into six proposed 'hallmarks' of People-Centred Clinical Research.
Six proposed hallmarks of people-centred clinical research
The following hallmarks have been designed by a steering group of public contributors, patients, researchers and NHS staff.
We think research will show these hallmarks if people are truly the focus of how a project is designed and delivered in practice and how researchers act.
They are just a start and we now want to know what you think. If you have any different ideas or views please let us know by completing our survey.
You can find out more about each hallmark, including an explanation of how we decided on them by selecting a hallmark.
- Trustworthy – the research process and the outcomes of research can be trusted
- Caring – the people taking part are cared for throughout
- Mutual – the research is conducted with and for the communities it affects
- Maximises inclusion, equity and diversity - all people can be included, within the context of the study
- Valuable – the research makes a difference to the people it is for and about
- As clear and as straightforward as possible – communication is clear and the burden to taking part is minimised
Sharing your views
We want to hear from as many different voices as we can to help improve research for everyone.
This includes, patients, carers, healthcare professionals, researchers and members of the public. Anyone can share their views, you do not need to have ever taken part in research before to contribute.
Complete our survey
To share your feedback all you need to do is complete our survey.
On average the survey takes around 30 minutes to complete depending on how much feedback you would like to share.
If you would prefer to have a conversation with us to discuss sharing feedback in a different way just let us know by emailing firstname.lastname@example.org adding 'People-Centred Clinical Research project' in the subject box.
You can also sign up to our mailing list to hear more about the results of the survey and get involved in future work.
How will any information you provide be treated?
The HRA is the data controller for this project. Any examples may be used anonymously in our reporting and in online guidance or recommendations for research teams.
We will not share any videos online or link to them in any way. You should try not to identify yourself or anyone else to us. If you choose to send us identifiable information, we will try to anonymise it, but it may be shared securely with the University of Lincoln.
We will not share this identifiable information with anybody else and we will keep it safely and confidentially for two years.
You can read more about how we will protect your data in our privacy notice.
Our project steering group
The project is steered by eight members of the public and eight members of the research community who work alongside a small project team from the HRA and the University of Lincoln. Read more about the steering group.
The People-Centred Clinical Research Project is a project that is part of the UK Recovery Resilience and Growth Programme (RRG).
The RRG programme is a partnership of research organisations led by the Department of Health and Social Care who are all working together to improve clinical research delivery across the UK. All of our recommendations will be shared with these partners to bring change.
Sign up for updates
We would like to keep you updated on the People-Centred Clinical Research project, including sharing the results of the survey with you.
You can sign up for email updates by completing this form.
Help us share the survey with your community
We want to ensure that we reach as diverse a group of people as possible with the survey, so we are asking you to please share the survey with your communities.
To help you reach out to people in your community we have developed some resources that you may find useful: