Make It Public – local consultation launches to help increase public access to research findings

Date published: 23 June 2019

Patients and the research community in Greater Manchester are being asked to get involved in a new consultation by the Health Research Authority to help increase public access to research findings.

The Health Research Authority (HRA) has this week, announced it will be holding a consultation workshop in Manchester on its new strategy to help increase public access to research findings.

The regulator will hold a workshop in Manchester on Thursday 25 July in Manchester city centre as part of a 12-week consultation targeting NHS, university and commercial researchers, as well as funders and patient groups ahead of the publication of its new research transparency strategy later this year. People, including patients, can also take part online.

The strategy, called Make It Public, will set out ways to improve transparency and openness in health and social care research.

The move comes as new figures show only 80% of clinical trials being carried out in the UK are publicly registered on time, while only 75% of medicines clinical trial findings are published on time by UK research sponsors, and while people who took part in research are keen to hear about the findings, very few receive that information in language they can understand.

Teresa Allen, Chief Executive of the HRA, said: “Transparency benefits research: making research public prevents work being duplicated and enables research findings to be used to advance knowledge and develop new treatments. But there’s also a wider benefit for society. It helps patients make informed decisions and the wider public see how Government, charity and commercial funding benefits the NHS and social care – and the wider UK economy. We have a fantastic range of high-quality research to shout about.

“I would encourage patients and the research community in Manchester to attend the workshop or complete our online consultation.”

The Make it Public strategy will focus on three key areas of research transparency – registering research projects, making research findings public and letting participants have access to findings from research which they have taken part in.

An online survey, open to all, will run until 6 September as well as face-to-face workshops in London, Edinburgh, Manchester, Cardiff and Belfast.

The HRA will then publish its final strategy by the end of the year to provide clear direction on how to make sure that patients, the public and professionals can easily access useful information about health and care research studies.

Grandfather-of-six Derek Stewart, 68, a retired teacher, from Nottingham, who was successfully treated for throat cancer in 1995, said that changes were vital to help patients make the best choices about treatments.

Mr Stewart, who is a member of the HRA’s Research Transparency Strategy Group, said: “If it wasn’t for research I might not be here today. It is vital that researchers work with patients to ensure their research methodology and results are understandable and transparent.

“The public need to be able to find and understand information about taking part in a study, read about the evidence that that has been gathered from studies and use this information to improve their health and wellbeing.

“The research community needs to be clearer and more distinct about what health research is taking place into things that matter to patients and the public.

“We need as many patients, relatives and carers as possible to take part in the HRA’s consultation to give us an accurate picture of how patients can benefit from research and how we can help improve clinical trials, health care research and add benefits to researchers as they design and implement their studies.”

Professor Andrew George, chair of the Research Transparency Strategy Group and non-executive director at the HRA, said it was now important for as many people as possible to take part in the 12-week consultation.

Professor Andrew George said: “I’d urge people to attend one of our workshops in London, Manchester, Cardiff, Belfast or Edinburgh or to take part in our online survey which takes about 15 minutes.

“We want the public and research professionals to help influence the final strategy. I am very grateful for the work of the Research Transparency Strategy Group – a group including sponsors, campaigners, funders, researchers and patients – who have helped to develop the overall vision for the planned strategy. We have outlined what we think are the commitments that the HRA needs to make to deliver that vision, and what others will also need to do. Now we’d like views about how some of those commitments will work in practice and what are the right measures to bring about lasting change.”

To read the draft strategy and take part in the consultation visit:

• www.hra.nhs.uk/makeitpublic