Article by Kate Dodd, Recruitment and Engagement Manager at the NIHR Liverpool Clinical Research Facility
Research should be inclusive of our communities, no matter their background, gender, beliefs or where they live. This is important to make sure that the treatments we are developing are safe, effective and acceptable for everyone. If research does not reflect the diversity of the population, then the results may not apply to everyone in the way we expect. This can lead to gaps in knowledge and, ultimately, inequalities in healthcare.
People differ in many ways, including genetics, age, ethnicity and co-morbidities. These differences can affect how people respond to treatments, so it is important that clinical trials include a wide range of participants. If trials do not involve groups that are representative of the population, then important information about dose, safety and effectiveness may be missing. This can have a bigger impact on communities that are already underrepresented in research, as they may not benefit equally from new treatments. These communities often already experience health inequalities and may also have less access to clinical trials, which limits their opportunity to receive advanced or cutting-edge care.
Public Patient Involvement and Engagement (PPIE) is vital in improving inclusion in research. Building relationships with communities helps to raise awareness about research and creates opportunities to work together. It also allows researchers to better understand and address barriers such as mistrust, lack of access, or limited awareness of opportunities. By involving patients and the public in research, studies can be designed in a way that is more accessible and relevant.
This is a key driver behind Kate’s PhD, which focuses on inclusion in early phase clinical trials. The PhD looks at several areas, such as identifying who our underrepresented communities are, the barriers and facilitators to taking part in COVID-19 studies.
Another part of the PhD focuses on the readability of participant information leaflets. These documents are an essential part of the consent process, but they are often written in complex language that can be difficult to understand. This can be a barrier for people with lower reading levels or for those whose first language is not English. By assessing the reading age of these leaflets and identifying ways to improve them, the aim is to make research information clearer and more accessible. This helps to ensure that participants can make informed decisions about taking part in research.
More recently, work carried out within the NIHR Clinical Research Facility in Liverpool explored the hidden benefits of taking part in research. This study looked at the outcomes of screening appointments (known as health checks) which are used to determine whether someone is suitable to join a clinical trial. During these appointments, some participants were found to have previously undiagnosed conditions, such as high cholesterol, anaemia or high blood pressure.
The research team reviewed several years of screening data to understand how often this was happening. This has helped to highlight that taking part in research can have additional benefits beyond the main aim of the study. For some individuals, these health checks provide an opportunity to identify conditions early, even when they are not experiencing symptoms. Early diagnosis can lead to earlier treatment and better long-term outcomes, which is an important benefit to recognise and share with potential participants.
Working with the public and patients is central to the work of the Clinical Research Facility, as well as Kate’s PhD. Public contributors have been involved in a wide range of activities that help to improve research. This includes co-designing studies, reviewing participant information to make it clearer, sharing their experiences, and supporting different aspects of research delivery. Their input helps to ensure that research is more patient-centred and accessible.
Public contributors also play an important role in raising awareness about research and encouraging others to take part. By sharing their experiences and promoting opportunities, they help to build trust and increase understanding within their communities. This is particularly important for communities who may not usually consider taking part in research.
In conclusion, making research more inclusive is essential to ensure that healthcare benefits everyone. Without representation from diverse communities, there is a risk that treatments may not be as safe or effective for all groups. Through approaches such as Public Patient Involvement and Engagement, and research focused on understanding and addressing barriers, progress is being made towards more inclusive clinical trials. Continuing this work will help to reduce inequalities and improve health outcomes for a wider range of people.
Medical disclaimer
This content is for general information only and is not a substitute for professional medical advice. Always consult your GP or a qualified healthcare professional if you have any concerns about your health.
Further Reading:
What Clinical Trial Screening Can Reveal About Your Health (video)