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What patients and the public think about health research

Last updated on 30 Oct 2018

Public confidence in health research is critical to its success and so we are committed to building the public voice into policy development.

Below are some examples of some public dialogue exercises we have carried out, which allow the public to consider complex issues in depth over a period of time, and to debate them with experts in the area.

Public support for greater data sharing with biobanks

A key public dialogue we commissioned alongside our partners the HumanTissue Authority (HTA), supported by the Sciencewise programme, run by the Department for Business, Energy and Industrial Strategy (BEIS), was about biobanks.

The main findings were that the public would be happy to share personal data alongside tissue that they have donated for research to biobanks – if they are given a clear explanation of how their data would be used.

The dialogue also found that people expect to be given a clear explanation of what they’re consenting to, and who their data will – and won’t – be shared with.

Together with the HTA, we are now working with key voices in the biobank field to create new guidance on seeking consent to link health data with donated tissue for research, including a template patient information sheet and consent form to future proof consent.

Want to know more about the biobanks public dialogue?

Recruiting participants in health research

Another public dialogue exercise we ran was about the identification and recruitment of people into health research.

Key findings were that the majority of participants supported the use of simplified consent in low risk pragmatic trials, and most participants agreed with using a simplified patient information sheet.  These findings led to our guidance on proportionate consent, which includes a suggested template for a simplified consent form for use in pragmatic trials.  

The dialogue also found that the majority of participants were open to the idea of research nurses having access to patient notes, with the proviso that patients are informed and have the ability to opt-out. 

These findings helped form our UK Policy Framework for Health and Social Care Research – which sets out what good research looks like. 

We are further planning to set up a Research Ethics Committee to give endorsement of recruitment registries using a consent to be contacted approach (also known as consent4consent), and have developed a set of standards to support this work informed by the findings of this public dialogue.

Want to know more about the recruiting patients public dialogue?

Feedback

Correspondence we have received suggests policies developed as a result of our public dialogues have been well received by researchers, but we’re always keen to hear more, so please send your views to hra.comms@nhs.net.  

Back to how we involve the public in our work