Laura Tantum on the publication of a new report, developed in partnership by use MY data, Medicines Discovery Catapult and Incisive Health, exploring how we can make better use of human tissue samples

Medical breakthroughs depend on research and this is often only possible as a result of access to human tissue samples. Patients are extremely generous in donating samples of their tissue. They know that doing so is unlikely to benefit them, but it could benefit future generations of people in a similar position.

In the UK, tissue donation is a success story. About 1 million patients have donated tissue for use in specific research studies, and there are a further 3 to 5 million samples held in tissue banks, for use in future studies. Yet it is also a source of frustration. Only around 15% of these samples are ever used.[1]

Researchers and innovators have reported difficulties in identifying and accessing tissue samples at every stage of the release pathway. As a result, the speed and quality of their research is impacted. And it’s not just the researchers who are affected – this is frustrating the wishes of patients who donate their tissue, perhaps at a period of anxiety in their lives, with the expectation that it will help other patients have access to better diagnostics and treatments in the future.

Of course, there are issues with privacy and consent. Much as with patient data (tissue is, after all, just physical data that has yet to be decoded), there are legitimate concerns which need to be addressed. However, the balance does not seem to be right.

Incisive Health has partnered with use MY data and the Medicines Discovery Catapult to bring together key figures from across the patient, clinical and research community to consider how more tissue samples could be used, more effectively. You can read the report summarising our findings here.

We were guided by a central insight: the patients we spoke to felt that they did not want to give consent for their samples to be used – they want to give an instruction. We reached two central conclusions. First, every sample in the UK should be discoverable. Second, the success of biobanks should in part be assessed by usage rates which should be published. It cannot be acceptable that tissue is simply gathered and stored. We must find ways of enabling its use.

In order to make this happen, the report sets out a ten-point action plan to address the issue with tissue. Recommendations are made at each step of the tissue sample pathway, but common themes run throughout: the release and use of human tissue samples must be underpinned by transparency, collaboration and voluntary action.

A key takeaway is the significant role that patients play in enabling research, and ultimately facilitating the discovery of new treatments, through donating their tissue. Patients’ views should be placed front and centre when conducting research using human tissue. This report is only a first step in making this happen. It is now time for the whole community to come together, in order to consider our recommendations in more detail, and agree actions that work for everyone.

[1] use MY data, Your data, your control, May 2018