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Life, death and data sharing

Andy High Res

Today is International Clinical Trials Day. It means a lot to me. Not just because clinical research has been responsible for an increase in life expectancy of nearly a decade since the 1960s, or because, since the 1980s, death rates from HIV have fallen by around 80%, or even because since the 1990s, death rates from cancer have fallen by 20%, but actually because it has had a significant and direct impact on my immediate family.

It’s this experience that leads me to follow the debate around clinical trial transparency so closely. There are a number of tensions within the debate. In fact, in my view, it’s a debate that has, at times, become unhelpfully polarised. The need to share data, to incentivise biopharmaceutical research and drive innovation, the need to protect patient confidentiality, ensure patient confidence in the process of clinical research and provide easy-to-understand, relevant information to trial participants have all been the subject of much debate.

But like anyone, my own personal experience has framed my understanding and sensitivities around the issue.  I have a close family member who has lived with HIV for over twenty years. They are only alive today because of three things: they have managed their condition with courage and foresight; the skill, expertise and care of the health professionals involved in their care; but critically, they have ridden the wave of pharmaceutical innovation in anti-retrovirals over the last 20 years.

My second shaping experience was my baby daughter. Born ten weeks early, in addition to many of the issues associated with premature birth, she also had to cope with a large, ulcerated, haemangioma causing her unmanageable pain, even with the highest doses of morphine her wee body could take. Clinicians in France, treating an infant with an unrelated condition, had observed that the heart medication they were using had a remarkable impact on haemangioma. They shared the data across the paediatric community and my wife and I agreed to trialling the medicine in my daughter’s case.  Within in a matter of weeks it had a dramatic effect.

So were does that leave me?

Well, I want a system that supports, incentivises and drives innovation, and I want data shared to benefit patients and medical science. For me, the EFPIA/PhRMA principles, implemented on 1 January 2014, go a long way to finding that balance. There is always a difference between those that advocate for change and those that are responsible for delivering it. But for me, the answers lies in collaboration; the entire research community needs to work together to strike a balance between sharing clinical data and protecting commercial-in-confidence information and patient anonymity. It is a process that I am – and I know the EFPIA member companies are – committed to.

International Clinical Trials day should be a cause for celebration but also an opportunity for all stakeholders in medical research to renew our commitment to drive innovation and share data responsibly.


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