The fourth meeting of the Research Transparency Strategy Group took place on 23 September 2019. Minutes can be found below.
The meeting was held between 2pm and 5pm at Skipton House, 80 London Road, London. SE1 6LH.
Expert group members
|Marise Bucukoglu||Head of Research Governance, University of Edinburgh||Attending via phone|
|Professor David Edwards||Professor of Neonatology, St Thomas’ Hospital London||In Attendance|
|Professor Andrew George||HRA non-executive director (Chair)||In Attendance|
|Dr Cham Herath||Director of Healthcare and Medical Affairs UK, AstraZeneca||In Attendance|
|Dr Simon Kolstoe||University of Portsmouth and Research Ethics Committee chair||In Attendance|
|Sile Lane||Head of Campaigns, AllTrials||Apologies|
|Dr Julie McCarroll||Northern Ireland Public Health Agency||In Attendance|
|Alex Newberry||Head of NHS Research Governance and Informatics, Welsh Government||Apologies|
|Professor Sir Steve O’Rahilly||Professor of Clinical Biochemistry, University of Cambridge and Director, MRC Metabolic Diseases Unit, University of Cambridge||Apologies|
|Dr Marina Parry||Senior Research Associate, UCL Cancer Institute||Attending via phone|
|Derek Stewart||Public contributor/patient engagement expert||In Attendance|
|Nisha Tailor||Head of Policy and Public Affairs, Association of Medical Research Charities||In Attendance|
|Dr Matt Westmore||Operations Director, NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)||In Attendance|
|Teagan Allen||Policy Officer||In Attendance|
|Clive Collett||Ethics Policy Manager||In Attendance|
|Nicola Gilzeane||Engagement Officer||Apologies|
|Eve Hart||Head of Communications||In Attendance|
|Juliet Tizzard||Director of Policy||In Attendance|
|Naho Yamazaki||Head of Policy and Engagement||In Attendance|
1. Welcome and introductions
Professor Andrew George welcomed everyone to the Research Transparency Strategy Group meeting and noted apologies.
2. Report on the Make it Public consultation
HRA secretariat presented a report on the Make it Public consultation. The report set out the engagement methods used during the consultation, the number and type of people who took part, expenditure on the consultation and the impact of the communications work.
The Group noted that there had been significant engagement with the consultation and that a wide range of audiences had taken part. The Group was particularly pleased to see that around a quarter of those taking part in the consultation were patients, carers, public contributors and research participants.
The Group agreed that the consultation responses enable HRA to move to the next stage of strategy development. Members agreed that in moving towards implementation, HRA needs to work closely with key stakeholders such as funders, registries and publishers to ensure consistency and alignment across the research system. In any further engagement, it should also consider focussing on other audiences, such as black and minority ethnic groups, the mental health community and young people.
The Group agreed that the consultation, which cost around £12,000, represented very good value for money. HRA secretariat reported that the Make it Public brand has been a success and now plan to develop it further, so that it can continue to support work to promote research transparency, whether carried out by the HRA or others.
HRA secretariat acknowledged that HRA’s impact and reach had been substantially amplified by support from stakeholder organisations. Members of the Group were thanked for their involvement in the consultation and their help in promoting the survey and workshops.
3. Early analysis of survey responses
HRA secretariat presented interim results of the online survey. The survey ran from 17 June to 6 September 2019 and received a total of 481 responses, 456 of which were completed through the survey and 25 offline. Of the responses, 67 were from organisations.
The survey contained a mix of quantitative and qualitative questions. HRA secretariat are analysing free text answers and will present a more complete analysis at the next meeting.
The Group noted that initial analysis suggests a difference in views between professional and lay audiences in some areas of the survey. It will be important to draw these out in the consultation report and show the reasons given by respondents.
4. Early analysis of workshops feedback
The consultation included five open workshops, in London (16 July), Manchester (25 July), Cardiff (31 July), Belfast (12 August) and Edinburgh (6 September). The workshops outside England were organised jointly with colleagues in the devolved administrations, giving the consultation UK-wide coverage. A total of 161 people attended the workshops.
The workshops consisted of plenary and table-based discussion around the strategy approach, the key issues in the consultation and an exercise to prioritise planned activities. Early analysis shows the following:
· Overall, there was a positive reaction to the strategy: it has the right tone and content, though the HRA should be careful not to slip into using research jargon
· The HRA should be clear about definitions (of clinical trials, for example)
· There is general support for starting with clinical trials
· The HRA should link the strategy to wider aspects of public involvement in research
· There is a general view that this is about cultural change, as much as changing requirements or systems
Funders are a key ally in delivering the
The Group noted the interim findings of the workshops.
5. Strategy outline
The Group discussed the outline of the strategy and agreed that registration, reporting results and giving participants information about the study findings remain important elements. The strategy should also include what action will be taken if researchers or sponsors do not fulfil their transparency responsibilities.
The Group agreed that the strategy vision and HRA mission should remain the same, subject to minor amendments.
The Group noted that initial analysis of the consultation responses suggests support for focussing the strategy initially on clinical trials, moving onto other types of studies over time. It was also suggested that certain areas of the strategy, such as giving research participants information about the study findings, should apply to all types of research immediately.
The Group made an interim decision that the strategy should focus initially on clinical trials, subject to seeing the draft strategy at the next meeting.
With regards to the types of transparency that the strategy should apply to, the Group agreed that the initial focus should be on registration, reporting results and giving research participants information about the study findings, but not to data sharing. However, this final type of transparency should be mentioned in the strategy and the HRA should continue to promote good practice and collaboration in this area.
6. Plan for 21 October meeting
The Group and HRA secretariat agreed that items for the next meeting should include the draft strategy and roadmap, an analysis of the possible use of sanctions and a full analysis of the consultation responses.
The next meeting is to be held on 21 October in London.
Minutes from the first meeting, held on 3 April 2019, can be found here
Minutes from the second meeting, held on 8 May 2019, can be found here
Minutes from the third meeting, held on 29 May 2019, can be found here