In 2022 we started the People-Centred Clinical Research project to find out what matters most to people about taking part in research, and how to improve it.
Here's what we did, what we've found so far, and what we're going to do next.
What we did
We convened the people-centred clinical research steering group
The People-Centred Clinical Research steering group, is a partnership between members of the public, the researcher community, the University of Lincoln and the Health Research Authority. The group is diverse in perspective, experience and expertise both personally and in research participation.
The group developed a charter for ways of working, which was used to steer the project, co-develop the hallmarks and oversee the outputs.
We looked at what was already known about doing research in people-centred ways
The University of Lincoln conducted a rapid review of the literature, which we will report on in more detail in the coming months.
We took what we found and created a working definition of people-centred clinical research. We had decided already to change 'patient' to 'people', because not everyone who takes part in clinical research is a patient, and we wanted to consider the impact on families and carers too.
We combined this information to create the six draft hallmarks, which we thought that research and researchers would show if they were putting people at the heart of their research practice.
We asked 'what matters most and how can we work together to achieve it?'
Being people-centred means asking what matters most and working together in partnership.
We asked people what was important to them about taking part in research and their good and bad experiences. We also asked about the things that might help or that are in the way of people taking part in research and of good practice. Finally we asked them what they thought of our six draft hallmarks and the descriptions we had given them.
We co-created a survey to ask these questions and we sent this out to over 280 community organisations and shared through our social media channels. We received over 400 complete responses.
We also held conversations with groups and individuals who we knew might not find or complete our survey. We collected demographic data and information on whether people had taken part in research before. We used this information to monitor who we were hearing from and to adapt what we did next. We will report again on who we heard from in a project report later this month.
We know we haven’t heard from everyone and that this is the start of a journey.
What we found
We found that:
many people would choose to take part in research in they had the opportunity to do so
there are three things important to people about taking part - these are:
trust - people trust the research and the researchers
purpose - people find the purpose is worthwhile
possibility - people find it possible to take part
We combined what we found into our principles and hallmarks of good people-centred clinical research and produced a set of resources for people to use that we think should help them achieve these things. We also identified barriers and enablers to taking part and to good people-centred clinical research.
What we will do next
report in detail on who we heard from and what they said
report on the barriers and enablers, and make our recommendations to the system
promote and share the hallmarks, and support how they are used and adapted into tools
produce more guidance for researchers and share best practice examples
work with partners to support action for change