Guest post by Sarah Markham, a member of use MY data. use MY data is a movement of patients, carers and relatives which focuses on the use of data for research. Use MY data aims to break down barriers to research by increasing transparency of how data is used (and sometimes not used) and highlighting the benefits of using data rather than just the perceived risks.
In the UK, there is an increasingly strong patient voice advocating for the clinical and social value of their data to be acknowledged, and for better use of that data to benefit patients.
As part of our work on this, use MY data is currently coordinating a campaign – The Issue with Tissue - to increase the use of tissue samples held in UK biobanks. Use MY data became involved in this area after learning about the extremely low use of tissue samples. It has been estimated that only 15% of samples donated for research in the UK are ever used. Use MY data members want to change that.
Whilst it’s a little different to use MY data’s usual focus specifically on data, there are some similarities. Tissue samples are a rich source of information that comes from patients that can be extremely valuable for research. And there are some specific scenarios where tissue samples can be used without direct consent.
Recommendations for change
Use MY data held a workshop and produced a report in collaboration with the Medicines Discovery Catapult, and Incisive Health. The report examines why so many tissue samples, which are donated by patients, are collected but not used. It includes recommendations for a series of actions and improvements.
One of the proposed actions was for patients to be acknowledged in research that has relied on the use of tissue samples. This proposal was based on the hugely successful “patient data citation” developed by use MY data, which is being used widely across academia and beyond.
During the workshop, I made the suggestion that medical journals should require clinical research studies which use human tissue to state the source of the tissue (e.g. which biobank/hospital etc). The rationale for this is that if the relevant tissue sources or repositories were credited in research papers in journals like the BMJ, it would encourage them to be more open about the kinds of tissue they hold.
“Use my tissue”
Making sure that donated tissue gets used in appropriate research studies will ultimately benefit patients. Sometimes tissue donation can be a very painful process for donors and therefore it is especially important to them that their tissue is put to positive use.
Beyond the potential benefits biobanks hold for health research, there are unresolved questions regarding the social, ethical, and legal implications of how they collect and use tissue. These include how to obtain informed consent for the collection and use of tissue samples, how to safeguard confidentiality and privacy of health information, and how to involve donors in decision-making and benefit sharing.
A national registry for tissue sampling?
It’s important to note that some tissue doesn’t require explicit patient consent to collect. This is similar to some uses of patient data. For instance, if tissue collected as part of clinical care turns out to be surplus and can be anonymised so researchers cannot identify the donor, there may be legitimate grounds for retaining it in a biobank. Currently there doesn't seem to be a consistent means of capturing the nature and extent of this form of tissue collection, for example via a national clinical registry. The Health Quality Improvement Partnership (HQIP) commissions these types of registries for NHS England.
The development of a national registry for human tissue sampling would help researchers identify potential sources of tissue, so that less valuable tissue is wasted. It could also support the option for tissue donors to be acknowledged in research (should they want to) for the tissue they have donated which has been used in a particular research study.
Looking to the future
It’s important that the clinical and social value of human tissue samples is recognised, and that samples are used to benefit patients. A national registry of tissue samples with the appropriate governance structure, policies and procedures in place could protect the interests of the public and individual patients. It may also open up the possibility for patients to be properly acknowledged for their valuable contributions to medical research.