I got interested in clinical trials because, as a Black woman who has had cancer, I was used to not seeing myself in the story. I did not see myself in posters or hear stories about women like me with cancer. Some people in my community do not even believe we can get cancer.
So, as a Black African patient, I wanted to get involved and bring my perspective and use it to shed light on things people do not know about, like the side effects cancer drugs can have on people of colour. In my case, the treatment meant my skin tone got darker and my hair became so flimsy. Today, it is no longer afro-kinky like it used to be; it is soft and curly like that of many White women.
It matters a lot to me that we can all have the chance to learn about and see how different drugs affect us. We need to know the impact they have and how everybody in the population is impacted by different treatments – not just one group.
I joined the NHS DigiTrials co-development panel more than 2 years ago and, since then, I have learnt about the role of real-life data in developing better drugs. I’ve also found out about the way digital technology is helping speed up and improve trials.
There are 10 people on the co-development panel of all sorts of ages and from different ethnic backgrounds and communities. We support service design and content creation and are involved in user research that helps the NHS DigiTrials team design and develop new ideas and aspects of the service.
Some of the stuff that is going on is really exciting. The NHS-Galleri Trial, for example, is looking to see how well a new test that can detect many types of cancer from a single blood sample performs. It is now the fastest recruiting trial in the UK.
But there is no room for complacency.
The truth is that some communities have little or no trust to draw on in this area. Sometimes, people do not want to get involved in trials or pioneering treatments because they feel they are just being used as guinea pigs – and there are good historical reasons for these concerns. It is critical that the NHS and medical research community doesn’t react passively to these issues or try to ignore them.
We need better information to reach all, not just some, populations. We need more education right from the first day you visit your GP. We need to actively seek conversations about the benefits of clinical trials and provide information on how to sign up for them in GP practices and in communities.
The more people know and understand, the more they will be willing to take part. If they feel that these trials are for them – and not for some other group – we will start to really shift participation rates.
That’s the thinking behind new materials our panel worked on with colleagues from the NHS Digital Privacy, Transparency and Ethics team and the NHS DigiTrials team. We explain in really clear terms how the NHS DigiTrials service collects, processes, and shares data with approved researchers. Our panel was involved in all aspects of the production of the short animation at the heart of the materials, including script and storyboard development, and I think we have ended up with a communication that is straightforward and clear and that addresses people’s concerns.
Clinical trials are so important to me because I have benefited from other people’s willingness to take part in research. What they did helps me help the next generation. I want people to get involved at the start, so that the NHS knows more about the needs of all of us and can develop treatments for all of us.
Eileen Phillips, GP Data Patient and Public Engagement and Communications Advisory Panel (PPECAP) co-chair and National Data Guardian Panel member, says actively seeking opposing points of views is essential if we’re to understand concerns and build public trust in the use of patient data.
Ruth Joy Akinsanmi, who previously worked as a project officer in the National Cancer Registration and Analysis Service (NCRAS), describes what her team learned when they examined the data and evaluated the effectiveness of a national cancer awareness campaign run by Public Health England.
Andrew Thorne-Marsh, Programme Manager for GP Data, reflects on the confusion around opting-out of health and adult social care data sharing and examines why it is essential to equip people with clear and accessible information so they can make meaningful choices on how their data is used.
Last edited: 10 October 2022 11:21 am