A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis


Project: Campaign for the use of Tissue Samples

Patient surveys, including the recent HRA/HTA public dialogue, indicate support for legitimate medical research using human clinical samples and data where donors are informed and given the choice to participate or not.

A use MY data report which followed our May 2018 workshop, “Your data, your control”, explored how patients, who want to make sure that their consented samples and data are used for medical research, can ensure that this happens.

The current estimate from the biobanking community is that only 15% of samples are used, leaving a huge 85% never used.

When people give samples to a research tissue bank, they sign up via an explicit and detailed consent process, which involves training the person taking consent, creating and getting approval for the consent materials, and having a discussion to bring out and respond to any concerns the patient has.

From a patient perspective uses such as this, where consent is obtained, is very much an expectation.  Having only 15% of samples being used feels unacceptably low.  useMYdata members were also concerned when they heard about the practical difficulties of accessing samples and data and wanted to take a role in maximising appropriate research.

Given the importance of efficient sample and data access to companies, the Medicines Discovery Catapult has been working with useMYdata to develop a workshop and potential campaign activity.

The outcomes of this work will be a considered patient and donor view of their wishes with respect to sample and data access, and a plan that allows these wishes to be heard and enacted. These wishes and plan will be contained in a manifesto designed for impact and aligned with the major stakeholders in this area. While the manifesto must be patient led, funding organisations have a unique opportunity to understand the perceptions and support the intentions of patients in this area, and to align their communications and delivery plans to the manifesto at launch.

The project is currently awaiting confirmation of funding.