What are some of the barriers to participation in research

Understanding the barriers to participation in research and listening to people's lived experience is central to improving research participation and making research people-centred. It helps to build trust and enables researchers to adapt their approach effectively.

The NIHR South West Central Regional Research Delivery Network (RRDN) worked with local community groups to understand perceptions of health and care research, hear what barriers people face to participation, and to raise awareness of the benefits of participation. From this work they produced a Community Engagement: Reflections and Recommendations 2022/23 Report.

Below are the themes to barriers to participation in research that emerged during this community engagement work :

Lack of knowledge and information about health and care research: People were often not aware of the breadth of research taking place or how to participate. Some had little awareness of the benefits of participation in research.

Consultation and engagement fatigue: Communities talked about regularly being approached by researchers on a wide range of issues. There was little knowledge about what had been done with their input and some were reluctant to engage further with research. Others spoke about feeling they had filled in endless surveys and never knew what was done with the information

Lack of agency and control over research: Some people talked about feeling 'done to' when it came to research. The value and impact of taking part is not always clear, especially when the impact is not seen for years.

Accessibility: Culture and language were identified as barriers to participation, particularly where studies require fluency in English. Finance was also highlighted, lack of access to transport for appointments was felt to be particularly challenging. Some people raised the issue of research being carried out online. This leads to digital exclusion for those without devices, connection or digital skills.

Fear/ Distrust: In some communities there was a clear sense of fear and distrust towards statutory bodies, including the NHS. This distrust was often the result of past experience so is challenging to overcome.

Representation. Community groups talked about not feeling represented by the research community. There was a sense that research is often carried out by 'outsiders', especially if the people asking the questions don't seem or look like the research participants.

Recognition: People felt that involvement in research should be properly recognised and organisations/ individuals should be paid. Vouchers were not felt to go far enough in many cases, people needed to see the impact of research and feel that it would be of benefit to their communities.

What is people-centred research?

Being people-centred means focussing research on what matters most to the people it is for and about. It involves working in partnership with them, and thinking about those who should have the opportunity to take part. It also means doing research in ways which people say are important when they take part.

Why is people-centred research important?

Research projects can fail when it is not as easy as possible for people to take part, or if they only provide answers for some people in society.

For research to truly benefit health and care and make a difference in the real world for everyone, researchers need to make sure the people the research is for and about are the focus, and that they are involved as equal partners.

There are already some ways that help researchers earn trust. Researchers already need to show that their projects are ethical, legally compliant and scientifically robust; and that patients and the public are involved in research.

However, research can be improved further by doing research in more people-centred ways. This approach makes research more visible, more inclusive and more successful.

How can researchers make their research people-centred?

The Health Research Authority (HRA) set-up the People-Centred Clinical Research project in 2022 to overcome barriers to participation in research, by identifying the changes needed to make people-centred research happen more often in the UK.

In August 2024, the HRA published a report titled 'Addressing the barriers to people-centred clinical research with recommendations for system-wide action'. The report identified the hallmarks of good people-centred research and made 19 recommendations for system-wide action to help the research community to improve any research they carry out in the future, and to make it more people-centred.

The infographic is an overview of what people-centred clinical research means and the hallmarks of good people-centred research.