Finding out what matters most to people in research

Research is carried out to improve health and social care for everyone.

It is important that the research being carried out is done in a way that people can trust, so that they can be confident to take part and use its findings.

That is part of why the Health Research Authority exists. We co-ordinate and support the review of planned research, particularly in the NHS, ensuring that the proposals have met all the relevant legal and safety requirements.

We also run 64 Research Ethics Committees in England and work closely with those across the UK, which are made up of volunteers, who look at proposals to do research and ensure that it is safe, ethical and puts people first.

In our 2022-2025 strategy we committed to ‘ask you what you want research to look like and act on this’.

We want to understand what is important to people so that we can better support our staff and Research Ethics Committees to look for these things when they decide whether the research can go ahead.

The Health Research Authority is not an organisation many people outside of research have heard of. That means we do not always have direct relationships with patients, so we are working with charities and organisations who work with patients and carers involved in research to help ask them what matters.

Starting important conversations

Over the past few months we have been speaking with Alzheimer’s Research UK and members of Huntington’s Disease Voice, an organisation hosted by the Huntington’s Disease Association.

We talked directly to members of Huntington’s Disease Voice, and to staff at Alzheimer’s Research UK who work closely with people and carers living with the diseases that cause dementia and Alzheimer's.

These conversations were fantastic and provided us with some invaluable information about what is important to them when it comes to research that we wanted to share.

Some of the things they told us were:

• accessibility – researchers need to consider the impact of participating for people at different life stages, for example people are often carers and work too
• access to research opportunities – hard to find information about how to get involved in research, with access being dependent on an individual’s ability to carry out their own enquiries
• assessing risk – participants with Huntington’s Disease said they were willing to take more risks because there is such little research carried out for this rare condition
• clear information – when thinking about taking part in research it’s important to have information which is concise, structured and transparent
• diversity - the lack of diverse representation in clinical trials (acknowledging that the challenges and barriers are complex)
• ending a clinical trial – when a clinical trial is ended or closed suddenly there needs to be more support for participants, carers and family members
• hesitancy – need for better understanding that under-represented groups have a history of mistreatment in research and even if this happened overseas, people in the UK may have been impacted
• managing hope – hope needs to be managed better for the whole duration of a clinical trial
• participating – would like to see more research with pre-symptomatic participants
• role of family and caring responsibilities – recognising the impact on the family and carers when it comes to taking part in research
• technology – participants face challenges if they are not experienced using technology
• training – knowing how to have the right conversations (and when) is important especially when participants are pre-symptomatic or high risk

What are we going to do with this feedback?

We will use the feedback to think about what topics could be further discussed with our staff and Research Ethics Committee members and identify whether our staff and committee members need further support to help them identify and act on issues that matter to people in research.

This feedback will also help us think through where we can make a difference going forward to improve people’s experiences of health and social care research, informing the HRA's next strategy.

We also want to know if this feedback resonates with you. Do you agree with the points made? Is there anything you want to add?

If you have anything you would like to add please email Dr Kirsty Edwards, Policy Manager at kirsty.edwards@hra.nhs.uk

Continuing the conversation

Over the coming months we will be reaching out to more charities, patient representative organisations and community groups to listen to what matters most to them. We want to make sure we hear from different perspectives.

If you work with an organisation that you think it would be useful for us to speak to please let us know by emailing kirsty.edwards@hra.nhs.uk