New consultation launches in Scotland to help increase public access to research findings
27th August 2019
PATIENTS and the research community in Scotland are being asked to get involved in a consultation by the Health Research Authority to help increase public access to research findings.
The regulator wants Scottish people to complete their online survey between now on 6 September or attend a workshop in Edinburgh on Friday 6 September at Paterson's Land, University of Edinburgh, Edinburgh, EH8 8AQ.
The workshop takes place on the final day 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.
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.
Charles Weller, General Manager of NHS Research Scotland – Central Management Team (NRS-CMT), said: “Improving transparency in research is important, building trust and accountability. For patients and the public, it explains what research is going on and what the findings are. For professionals, it avoids duplication of effort and enables findings to be used to prevent ill health, and develop new and better treatments; and importantly for everyone it helps improve the quality of research, allows for more informed decisions and shows the public how Government, charity and commercial funding for research could improve health, and benefit the NHS and social care.
“With a vibrant research environment across the UK and more people taking part in research, we are delighted to be working with the HRA and partners across the UK on the Make it Public strategy, seeking views on the commitments and measures that will bring about lasting change. I encourage patients and the research community in Scotland to attend the workshop or complete the 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. It is being developed after the HRA was charged by Parliament’s Science and Technology Committee to devise a strategy to make a step-change improvement in research transparency.
Following the consultation, which has also involved workshops in London, Manchester, Cardiff and Belfast, the HRA will 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.
Professor Jacob George, from the University of Dundee, who with his team turned around compliance with trial registration and reporting at their Clinical Trials Unit is also backing the new consultation. The work that the University of Dundee team has done in this area has resulted in the University having a 100% reporting rate.
Professor Jacob George said: “It’s important for researchers to take part in this consultation so that Regulators and Government are aware of the issues they face and can take corrective steps to ensure better compliance. We’ve found that embedding trials registration and reporting into the life-cycle of the trial ensures that this becomes a natural part of conducting trials. Registering trials on publicly accessible databases and reporting results is crucial for ensuring both funders and the public have confidence in research outputs from UK institutions.”
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.
*Denneny C, Bourne S, Kolstoe SE ‘Registration audit of clinical trials given a favourable opinion by UK research ethics committees’ BMJ Open 2019;9:e026840. doi: 10.1136/bmjopen-2018-026840
**EU Trials Tracker, EBM DataLab, University of Oxford. Data for clinical trials on the EU Clinical Trials Register with UK sponsor as at 3 June 2019