Involving black people in clinical research
Black and minority ethnic (BME) communities are currently under-represented in clinical research and there are lots of reasons for this - factors are thought to include researchers not engaging with the right people in the BME communities leading to a lack of awareness of research opportunities, language and other cultural barriers. Additionally, we know that past experiences of healthcare affect how BME people feel about getting more involved. It’s really important this is addressed to help make sure that both the research and resulting healthcare are relevant for the whole population.
The research done at Centre for Evidence Based Dermatology (CEBD) is all about improving healthcare for those affected by skin conditions. Involving patients and carers in the development of this research is also really important as it improves the quality, relevance and appropriateness of the research. If we don’t have wide representation in this, including from those with skin of colour, then we can’t be sure that the research conducted addresses everyone’s needs.
We spoke to Dr Carron Layfield who manages the CEBD to find out the importance of recruiting more black people into research.
What is the Centre for Evidence Based Dermatology?
The Centre for Evidence Based Dermatology is a large research group at the University of Nottingham. We focus on independent clinical research for the treatment and prevention of skin conditions. This includes more common skin problems such as acne, eczema, vitiligo and cellulitis and rarer skin diseases including blistering skin disorders and vulval conditions.
We also develop useful information, resources and tools for healthcare professionals and patients. This includes things such as the My Eczema Tracker App which allows patients to track their eczema and the Skin of Colour Resource that brings together resources, systemic reviews and review articles based on topics relevant to skin of colour.
Our aim in doing all this is to provide better evidence for the treatment and prevention of skin conditions and to improve the care of those affected.
BSD: What sort of research does CEBD do?
CL: We use lots of different approaches to compile the research that we do. This includes:
· Large clinical trials to test how effective treatments are. For example, our recent Hi-light study investigated the use of hand-held UVB units and steroid cream to treat vitiligo. A total of 517 vitiligo patients were involved and the study showed that using the two treatments together was more effective than using them separately.
· Developing online resources to help patients manage their skin conditions. The Eczema Care Online Project is developing an online toolkit to help enable people with eczema to get control of their condition and live well with eczema.
· Using information that is routinely collected during normal clinical care. This involves analysing data from GP and hospital databases which allows researchers to study much larger numbers of people right across the UK. This is an efficient way to investigate rare skin conditions such as blistering skin diseases which can be difficult to do clinical trials on due to the low numbers of patients affected.
· Developing diagnostic tools for doctors and nurses to use so that skin conditions can be better diagnosed. A good example of this is our DIPSOC psoriasis study. Psoriasis is difficult to diagnose in younger children and can be mistaken for other skin conditions by healthcare professionals. DIPSOC has been investigating what signs best identify psoriasis in children to develop better guidance for use in clinical practice.
· Doing evidence reviews of published skin research. This allows us to look at lots of different studies together to see if there are patterns and trends. These reviews also help to identify what research needs doing in the future.
· Information about health problems that you see in news headlines often comes from reviews such as this.
BSD: Why is this important?
CL: When we look at the patients who have taken part in the studies and clinical trials we’ve done, we can see that those from BME communities are generally under-represented. This isn’t just seen in the work that CEBD does – it’s common across clinical research and isn’t due to one specific reason as outlined earlier. This is a real concern as it could mean that the results coming out of research aren’t relevant across the whole population which may mean that the healthcare people receive as a result may not be effective or acceptable for all. To help address this, it’s really important and necessary that researchers genuinely engage with BME communities to try and ensure that their needs and views are properly considered when developing research.
We really need more people from BME communities to get involved in the CEBD Patient Panel. When we set this panel up we advertised through patient support groups, via social media and involved patients and carers who had worked with us previously. People with skin of colour are under-represented on the panel; we have most likely been looking in the wrong place to get people involved as we have lacked the appropriate contacts to support this. To start putting this right, we are reaching out via groups such as BSD to help us make better links with those from BME communities who are interested in getting involved in skin research.
We want to work with you to find out how the research we do can be more relevant and to help us get more understanding of why people with skin of colour are not engaging with research so that we can at least try and do something positive about this. Working together and building long-term relationships as part of the CEBD patient panel should help to build trust and make sure that the needs of a wider range of patients are better addressed when we are developing the skin research we do. In turn, this should mean that the research will be more attractive for people to take part in so the results and potential changes to healthcare will be more relevant and appropriate for all.
BSD: How is this research funded?
CL: The research is funded by medical research charities including the British Skin Foundation and an organisation called the National Institute for Health Research which is the research part of the NHS.
BSD: How do you involve patients in CEBD research?
CL: The needs of patients drive the research that we do at CEBD and both patients and carers are involved in lots of different ways.
- We have a Patient Panel to enable patients and carers affected by skin conditions to get involved in developing our research. We have 45 panel members from across the UK, affected by a range of skin conditions; currently less than 10% of these are from BME communities.
- The CEBD Patient Panel help prioritise what research is done, inform research by taking part in surveys and group discussions and review patient facing materials to ensure they are clear, easy to understand.
- Patients and carers are also involved in the management of research, helping work out what the research results mean and getting research results publicised.
Panel members Amina Ahmed shares her experiences of being involved in this blog Maxine Whitton talks about her experiences in clinical research in her video testimonial.
BSD: How can interested people get involved?
We are hoping that if more people from BME communities get involved in the CEBD Patient Panel it will help to make sure that the needs of a wider range of patients are better addressed when we are developing research. In turn, this should mean that the research will be more attractive for people to take part in meaning that the results and potential changes to healthcare will be more relevant to all.
To find out more and how you can get involved and make a difference please contact Carron Layfield, who co-ordinates the CEBD Patient Panel, on carron.layfield@nottingham.ac.uk
BSD: What about those who want to get involved in clinical trials as opposed to developing research?
The National Institute for Health Research (NIHR, the research part of the NHS) have developed a really useful search facility to help you find clinical trials going on that you could take part in. You can search for a condition (not just skin related) and by your postcode/area to find studies near to you – it’s called Be Part of Research and you’ll find it at https://bepartofresearch.nihr.ac.uk/.