Patients, the public and the research community in Northern Ireland are being asked to get involved in a new consultation to help increase public access to research findings.
A workshop in support of the consultation, organised by the Health Research Authority (HRA) along with the Health and Social Care Research and Development Division of the Public Health Agency in Northern Ireland, will take place in Belfast on Monday 12 August.
Through current engagement activities, and ahead of the publication of a new research transparency strategy later this year, views are being sought from across healthcare, university and commercial researchers, as well as funders and patient groups.
An online survey, for individuals including patients and service users to complete, will run until 6 September 2019. The outputs of these current activities will help to shape the forthcoming Make it Public strategy.
The strategy 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 trials of medicines by UK research sponsors publish research findings on time. In addition, very few research participants who are keen to hear about the findings of the studies in which they took part receive information in language they can easily understand.
Dr Janice Bailie, Assistant Director of the Health and Social Care Research and Development Division of the Public Health Agency, said: “Transparency benefits research: making information about funded research public reduces the likelihood of work being duplicated, thus ensuring better value. It also enables research findings to be used to further advance knowledge and develop new treatments or interventions.
"There is also a wider benefit for society: it helps patients and healthcare professionals to make informed decisions, and allows the wider public to see how Government, charity and commercial funding benefits health and social care service delivery, as well as the wider UK economy. An excellent range of high-quality research is funded and undertaken in the UK, and it’s important that the benefits of that work are publicised and maximised.”
Dr Janice Bailie, Assistant Director of the Health and Social Care Research and Development Division of the Public Health Agency
“Although we’ve seen real improvements in openness and transparency over the last few years, particularly in commercial pharmaceutical research, the figures show that we have more to do. The Make it Public strategy will set out both our commitments to facilitating transparency from researchers and clarifying our expectations of them.
“I would encourage patients and the research community in Northern Ireland to attend the workshop or complete our online consultation.”
The workshop will take place at Mossley Mill, Carnmoney Road North, Newtownabbey, Belfast, and places can be booked online.
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.
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.
Margaret Grayson, a retired therapy radiographer, from Belfast, who was diagnosed with breast cancer in 2004, is encouraging patients, relatives and carers to attend the workshops and voice their opinions in the online survey.
Margaret said: “I value research as part of excellence in health care. It was research that determined my treatment plan for breast cancer – my surgery, chemotherapy, radiotherapy and hormone treatment. After my treatment I really wanted to go back and thank patients who had gone on clinical trials to help develop the drugs that ultimately saved my life.
“Everything is based on research and I feel it’s important for us as a population to have research explained to us.
“Researchers and patients working together in partnership helps ensure that research methods are acceptable and understandable. It also means the results of research are transparent and accessible.
Margaret Grayson, a former cancer patient, from Belfast
“This transparency is important for both health professionals and people to allow them to make informed decisions about treatment choices.
“It is vital that the research community publish and make available -– in understandable language – all research findings. Public access to research findings will be of benefit to the whole population.”
Professor Andrew George, chair of the Research Transparency Strategy Group and non-executive director at the HRA, emphasised that it was now important for as many people as possible to take part in the 12-week consultation.
“I’d urge people to attend one of our workshops, 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, which is made up of sponsors, campaigners, funders, researchers and patients, and which has 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. We are now asking for views about how some of those commitments will work in practice and what measures are the right ones to bring about lasting change.”