Making health research open and transparent: the need for cross-sector collaboration and partnerships

Published: 21 March 2023 (originally published on Health Open Research on 19 April 2023)

By Demitra Ellina, Associate Publisher, Health Open Research

Last month, Monday 20 March 2023, marked the start of Make it Public week. Coordinated by the UK’s Health Research Authority the week comprised a series of virtual webinars, workshops and panel discussions which brought together experts from across health and social care to explore the topic of research transparency and share best practice.

In the UK the NHS Health Research Authority (HRA) has a legal duty to promote research transparency in relation to health and social care research taking place in the UK. And everyone involved in research about health and social care – from researchers and funding bodies to registries, publishers and the public – has a part to play in delivering this.

Through their Make it Public campaign, the HRA are working with key players across the research system, patients and the public to:

Make transparency easy 
Make transparency the norm 
Make information public.

Both F1000 and the Association of Medical Research Charities (AMRC) are strong proponents of Open Research, having come together to launch, Health Open Research. The AMRC supports its members to encourage open research as a responsible funding practice, whilst F1000 supports researchers to publish their research transparently through its open research publishing model. This is, in part, why both F1000 and the AMRC were invited to take part in Make it Public week.

Speaking about what drives science, Matt Westmore, HRA Chief Executive and co-chair of the Make it Public campaign group, said “It’s the gradual accumulation of knowledge by communities…..communities include the patients and the public, and it includes policy and decision makers in a much more interesting and vibrant space in which we can work together to bring about change, as long as we share knowledge and share experience.”

Providing researchers with routes to make all research outputs openly available, in full, and in formats that make them as discoverable and useable as possible is a key factor in ensuring research is transparent. Open research practices are increasingly being adopted by researchers, institutions, and funders, helping to deliver knowledge that can be used and reused with real-world impact.

In this interview, Rebecca Lawrence, Managing Director at F1000, and Catriona Manville, Director of Research Policy at AMRC, the founding partner of Health Open Research, discuss the importance of research transparency, and why working collectively across the research ecosystem is vital.  

Why does research transparency matter to you (why is this something you care about) and how are you working together to support this?

[Catriona] The AMRC is a membership organisation dedicated to supporting medical research charities in saving and improving lives through research and innovation. We represent over 150 charities of various sizes who all fund research; from household names such as Cancer Research UK, Wellcome and British Heart Foundation to smaller charities who invest in specific areas of unmet need. Together, AMRC members are a significant public contribution of medical research in the UK. Over the last decade AMRC members have invested over £15 billion in research.

Transparency is key to delivering on our charities’ missions. It ensures that benefits to patients and the public are realised as quickly as possible. But more than this it is fundamental for the involvement of the public in research. It has been shown that public involvement improves its quality and impact of health and social care research. For the public to be involved it is important they are aware of research. This includes for example being:

informed about opportunities to participate,
involved in funding strategies and decisions and
aware of the outcomes of research, both that they participated in and more broadly.

[Rebecca] Since 2013 F1000 has been working with researchers, research organizations and funders to put open research principles into practice. At its core, open research is about increasing research quality, boosting collaboration, speeding up the research process, making the assessment of research more transparent, promoting public access to scientific results, and introducing more people to academic research.

Our unique publishing model is designed to maximise transparency and accelerate the progress of research by enabling others to build on new ideas and findings right away, wherever and whoever they are. At the core of what we do is ensuring that researchers can openly and freely disseminate all robust research outputs alongside the data and code that the findings are based on. Ensuring that the research data and code are available means that research findings can be validated more easily, and then used, reused and built on by others. And enabling, and even encouraging, researchers to share all their outputs whether the findings are positive and highly significant, or where hypotheses haven’t worked or the findings are more incremental, is essential to us all gaining a more balanced and accurate understanding of the latest knowledge.

This approach is crucial in:

Accelerating the progress of research by researchers and their peers and increasing discoverability, which in turn leads to greater impact and recognition.
Providing fast and full access to research for policymakers, commissioners and clinicians to better inform their decision making.
Ensuring the public get access to the results of the research that they may have helped to fund and that could affect and benefit them.

Together these elements help to improve equity and inclusivity in knowledge exchange, and hopefully enhance trust in the academic process and the research itself.

We see the real-world benefit of this especially for health-related research. This is one of the reasons we have been working with the AMRC on Health Open Research, providing a route for charity-funded research to be shared rapidly and openly. This increases the visibility of that research, speeding up new policy interventions and potential treatments, ensuring that the benefits of research reach those that need them – patients, their families, their carers – as soon as possible.

[Catriona] AMRC provide a huge amount of guidance to our members on how to fund research, from principles of peer review, to public involvement and the appropriate use of animals in research. Working with F1000 to deliver Health Open Research has given us an opportunity to operationalise this guidance and provide an avenue for our members to support the research community to achieve the shift to open research. When we started there was a small group of charities championing this and working with us. Over time we have been able to expand it to an offer available to all member charities – and now the system beyond charity funded research.

Health Open Research is designed to ensure all research results can be shared rapidly and widely, helping to minimise duplication and waste and maximise the potential for real world impact for patients.

What improvements have you seen in research transparency in the last 12 months, and what difference has this made?

[Rebecca] It is incredibly heartening to see key players within the research ecosystem join with F1000 to implement programs, policies and initiatives that are focused on delivering open research principles to ultimately improve lives. Some of the recent announcements across the world are game-changing for research transparency, particularly around making sure data is openly available to all. Excitingly, we are starting to readily see the emergence of new requirements around open research and data as a condition of funding. Increasingly, research funders are looking to ensure that the findings from the research they fund can be freely accessed by everyone, used and built on. There is also a growing focus on data sharing to support reproducibility and reuse of research.

[Catriona] Over the past year, we have been pleased to work with F1000 to relaunch AMRC Open Research as Health Open Research. This is now a route for all medical, health and social care researchers to publish articles and materials associated with their research. The publishing platform uses an open post publication peer review model, so that the articles are available as soon as possible and then reviewed, and the reviewer’s comments as well as their name and affiliation are published alongside the article. We hope options like this will increase the availability of research material to all and further build trust in research. It is important that researchers, practitioners, policymakers, and members of the public worldwide can freely access and make use of research findings.

What changes do you want to see next in the area of research transparency, and what could the impact be?

[Rebecca] We want it to be the norm for researchers to share all their research findings openly. We also want researchers to share the data that underpins their research findings, and we want to see research peer reviewed in a much more open and transparent way to enable more open and balanced discussions around the latest discoveries. Achieving this at scale requires all stakeholders to work together to make it easier for researchers to share what they’ve discovered quickly and efficiently, freeing up their time to focus on new projects and lines of investigation.

We would also like to see more open and efficient mechanisms to evaluate and validate research findings to help increase public trust and confidence in research.

[Catriona] Going forwards we would like to see everyone thinking about transparency and the role they can play, from funders to researchers and regulators. One of the things I really enjoy about the Make it Public campaign is the ability to bring all those, and more, groups together to deliver change.

What one thing do you think could make research transparency easier/the norm?

[Rebecca] Collaboration! It is becoming more and more apparent that not one organisation, and certainly no single publisher, can by themselves shift the system to one that is much more transparent. It is a huge ship to turn but there is undoubtedly enthusiasm to make it happen. We have to do this collectively but that’s in itself challenging.

All those involved in the scholarly research ecosystem – publishers, institutions, funders, infrastructures – need to work together, removing barriers and making it easier for researchers to make their findings available in an open and accessible way. Together we need to minimise waste and maximise return on investment for research. We see how difficult it is to adapt existing workflows and systems on an industry-wide basis. By working together, we can update the current infrastructure to enable new benefits for all involved.

[Catriona] I’d echo what Rebecca said. Everyone has a role to play in making this happen. Over the next year I hope AMRC can support our member charities, and by extension researchers and the public, by providing guidance on how transparency can be part of research and the processes around funding and reporting it.

The original version of this interview was published on the HRA website.