Equity in research toolkit

It is known that there is under-representation of diverse ethnic and racial groups in clinical trials. This is a concern for many reasons, but in particular because many health conditions disproportionately affect people from under-represented communities, with Covid-19 being the most recent example. [i] [ii]

It is important to understand the reasons why recruitment to clinical trials does not always include the people for whom the research is most relevant. These include mistrust of health research and the medical profession,[iii] and practical and logistical barriers such as information that is hard to understand or not easily available, and a lack of knowledge about clinical trial opportunities

The Covid-19 pandemic highlighted these inequalities, and the PRINCIPLE, and later the PANORAMIC, trial recognised the need to recruit participants most at risk of developing serious disease.

These trials took novel approaches to reach out to different communities through trusted individuals and groups – these will be described in this short guide. Learning from these engagement strategies and understanding the importance of community involvement can help to try to address disparities in health research.

Their position in community settings means that pharmacies are a natural choice when it comes to engagement with local communities and populations. Pharmacies are often more accessible than other health services, as well as having increased visibility.

The use of posters and other publicity means that people from all backgrounds can be made aware of opportunities, and find out more about them from someone who may be more familiar to them than a researcher working on the trial. Potential participants may be more likely to take part in research if they are approached by someone they know and already have a relationship with.

Using the pharmacy network can help to reach diverse communities and areas of high deprivation, which are traditionally poorly represented in research. As well as working with community pharmacies, there is also the opportunity to work with larger, national pharmacy chains which have a greater reach and more resources.

For PANORAMIC, engagement with pharmacists was boosted by the regulatory body, the General Pharmaceutical Council, promoting the trial through their website. So all registered pharmacists were emboldened to encourage patients to consider the trial given that it was endorsed at a high level. There would be opportunity for other regulators to support trials and encourage their members to raise awareness and support participation.

Universities situated in areas of high deprivation and in communities of ethnically diverse backgrounds offer different opportunities to work with local populations. Gaining support at the highest levels from vice chancellors means trials can be promoted in a variety of ways. A key method is through their websites and press – articles and interviews with staff endorsing the trial and communicating initial findings are more likely to be read than academic journals.

Students can also play a key role in engaging with local communities. In the PRINCIPLE trial, students were trained as ‘ambassadors’ to go out to shopping malls, vaccination centres and around the University campus to advocate for the trial and provide information. Receiving these messages from organisations and individuals who are trusted and local to the area means it is they are more authentic and easier to relate to, as well as being culturally appropriate and more understandable.

The reach and influence of faith groups cannot be overstated in terms of engaging with local communities. This is based on the great trust that exists and also the communication channels which are already established. Places of worship provide opportunities for messages to be disseminated in various ways – posters, face to face at prayers, through their websites and social media, as well as traditional media.

Faith leaders have varying beliefs, and understanding these is important for ensuring appropriate engagement, which will be more targeted and ultimately more successful.

Another group important group to engage with is the organisations that bring together health and care professionals.

As well as being organised for specific professions some also represent particular religions or communities, for example the British Association of Physicians of Indian Origin, Muslim Doctors Cymru and Diabetes Specialist Nurses Forum UK – therefore they have the potential to reach a wide variety of people.

The organisations are comprised of front-line workers so informing them about the trials means they are in turn able to directly raise awareness to different communities. They may also be able to help in producing materials in other languages and formats.

Another avenue that was found to be of value in increasing the reach of the campaign was through relevant celebrities and social media influencers. Lady Anne Welsh and Mr Motivator, both of whom have established audiences of thousands of people, many from under-represented communities, promoted the trials through Instagram and Twitter.

Other key people who can help publicise trials are Chief Medical and Nursing Officers from across the four nations.

The trials also gained publicity through other, one-off routes, such as taking advantage of International Women’s Day events and partnering with the Asian Media Group.

• Working closely and directly to help ensure messages are appropriately tailored – be conscious that what is acceptable in one culture may not be in another.
• Create information and resources in different languages and shared through different communication channels.
• Enable autonomy and a sense of ownership of the development and management of messages through co-badging.
• Develop frameworks/SOPs that build in cultural awareness from the start.
• Offer regular training with real-life examples and successes.
• Provide opportunities to go out to local communities, or invite speakers in.

It is important to also recognise the barriers to more inclusive research. By identifying these, measures can be taken to try to remove them.

• Goodwill has a limited lifespan – dedicated investment and support is needed.
• Sustainable, long term, relationships of trust with organisations and their leaders need to be established – not just one-offs.
• A sense of belonging and urgency needs to be created.
• There are limitations of the resources of trial / site teams.

Using these methods for engagement has shown that the will to join clinical research is there, but steps away from the traditional methods of promoting and recruiting to trials need to be taken to ensure as many people as possible are informed and have the opportunity to take part.

Greater cultural awareness at all levels will support this broader thinking, and there are lots of things that individuals and research departments can do to work towards this.