Many people are altruistic when it comes to engaging in research and sharing their data for the benefit of others, writes Dr Bryan Hennessy, Consultant Oncologist at Beaumont Hospital, cancer researcher at the RCSI, and clinical lead of Cancer Trials Ireland. Dr Hennessy is also a member of the Irish expert panel for the FutureProofing Personalised Health Index, which is supported by Roche.
Would you take part in a clinical trial? Do you know what one involves? Do you know you are more likely to receive better care if you are a participant in a clinical trial?
Having worked for years in the United States, where clinical trials form almost a routine part of cancer care, I was surprised to see the scepticism and mistrust in terms of the public attitude to clinical trials upon my return to Ireland. The historical misperception of the “guinea pig” or “lab rat” persisted, with many people viewing cancer trials as overtly experimental or even a “last resort”.
Since 2017, Cancer Trials Ireland has been running an information campaign to both heighten awareness of, and encourage participation in, clinical trials. The goal is to help people understand the benefits of clinical trials and cancer research.
This campaign has been extraordinarily successful. Our most recent survey, conducted in late 2020, found that 80 per cent of people in Ireland have an understanding of the importance of clinical trials, an increase of seven per cent since 2009. This rises to 87 per cent for those who have had a cancer diagnosis, and one in two cancer patients would be open to taking part in a clinical trial1.
On a personal level, myself and my colleagues in oncology see a much-enhanced willingness and openness towards clinical trials in hospitals and in our interactions with patients. Our engagement and participation in clinical trials has palpably increased. Our patients now ask us about trials, rather than us broaching the subject.
Despite our best efforts, there are still those that are sceptical. Yet most people now understand the benefit to themselves and to others; the survey found that the majority of those respondents willing to participate in clinical trials were being motivated to do so in order to contribute to the advancement of treatments and therapies. This also reflects my own experience, where I see patients being wholly altruistic in terms of their participation; they are happy to engage in research because they realise the benefit it may have for others in the future, not necessarily themselves.
Concerns about trust and transparency still persist, however, and there must be a wider systemic response to addressing these. We learned from the Cancer Trials Ireland survey that people are more willing to share personal medical information if it is kept confidential, with some 72 per cent indicating this, up seven per cent since 2009. We also saw a corresponding drop among people who were unwilling to share their personal medical information from 19 per cent in 2009 to 11 per cent today1.
People may understand that their medical data is being used for research purposes and for the betterment of cancer care in the long run, but they may still have worries about who has access to this data. As we grow participation in clinical trials, people must be imbued with confidence that their data, and the systems that gather it, are safe and secure. Other countries such as Finland, Austria and Netherlands have implemented data sharing and civic participation seamlessly into their health systems, according to the recent
The more data we have, the more information we have, which means the more research we can do. If we don’t keep researching, then we can’t make progress in cancer care and outcomes. It is thanks to the willingness of people who took part in trials all over the world over the past 50 years that means we are able to deliver the best treatments now – if it wasn’t for them, offering their own health data for research purposes, we simply would not have made these advancements. Participating in clinical trials and sharing your health data doesn’t just benefit you – it benefits all of society.