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Understanding ARC researchers’ practices regarding the equality of participant involvement

To understand ARC researchers’ practices regarding the equality of participant involvement in the planning, delivery, and implementation stages of ARC EM research 

Why the research is needed? 

Some people, such as South Asians, or LGBT women, are more likely to suffer from poor health than others. As health services are informed by research, it is important that research studies represent all in society to ensure all receive the best healthcare.

What is already known about the subject? 

There is a lack of fairness in access to health services and health research. For example, a 2017 study found BME adults were less likely to have taken part in important medical research than any other group. 

Who we are working with? 

We are working with members of the public and researchers leading on health research projects across the East Midlands. 

How are patients and the public involved? 

The study was designed in response to requests for greater inclusion of seldom heard people in research. We will continue to engage the public through workshops in community venues, hosted by our Centre for BME Health Community Engagement officer. We will develop a group of public advisors to work with the project team, to advise on areas of the project such as research questions and promoting the findings. 

What we will do? 

A challenge in Patient and Public Involvement and Engagement (PPIE), and research participant recruitment, is to include people with a wide range of experiences, including those who repeatedly find themselves at the margins of society. Therefore we will use an arts‐based approach to develop a visual representation of a range of diversity characteristics (e.g. ethnicity, sexuality etc.).  We will also create interview and survey questions to utilise with Principal Investigators, Project Managers and Research Associates of ARC EM studies from 2020 to 2023.  

In addition, all these participants will complete an online survey at the start and end of the projects. The interview and survey focus on how the studies recruit and engage participants across the range of diversity characteristics, and how they implement findings. We will also access data from each projects’ equality monitoring procedures.  

What the benefits will be? 

Increased understanding on representation and how studies work with individuals from seldom heard groups. Findings will be presented back to the public and workshops used to generate recommendations. This information will be used to change research practice to make it more representative. It could also identify strategies that may help overcome the often unidentified challenges of engaging seldom heard groups. Being “seldom heard” means that existing practices in organisations including universities and health and social care providers may not match the needs of all members of the public. 

When the findings will be available? 

The findings will be available in 2023.

How we are planning for implementation? 

The outcomes will be turned into a video and infographic to be distributed among all Applied Research Collaborations in England and the public.  

Contact

Dr Ash Routen, ar508@leicester.ac.uk