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Make it Public

Transparency and openness in health and social care research. A public consultation.

This consultation describes our plans for realising our research transparency mission. We are keen to hear your views about them, so that our final strategy is bold but feasible. 

The need for a new strategy

Why transparency is important?

The UK has a thriving health and social care research environment. More and more of us are taking part in Make it public hashtagresearch studies, and donations to medical research charities are on the rise. This research translates into better care for patients, as well as the wider economy. 

Scientific and medical publishing has become more accessible over recent years and new initiatives are driving towards research findings being ever more freely available. However, even where a research publication is not hidden behind a paywall, it is not necessarily written in a way that patients and the public can understand. The people who take part in research studies should have an opportunity to know about the findings, to value the contribution they have made. 

Transparency about what research is going on, and what its findings are, is important for patients and the public. It builds trust and accountability. It’s also essential for professionals. It avoids duplication of effort and enables findings to be used to develop new and better treatments for patients and service users. It also helps improve the quality of research.

When research is carried out openly and transparently, everyone benefits: 

  • patients and the public can see what research is taking place and access clear information about the results 
  • patients, service users and carers know about research that is relevant to them, giving them the opportunity to join studies 
  • health professionals, commissioners, researchers, policy makers and funders can use research findings to make informed decisions.

What role do we play?

There are many different people and organisations involved in research: clinicians and scientists carrying out research; patients, services users and carers helping to design and then taking part in research projects; funding bodies such as the National Institute for Health Research (NIHR) and the many medical research charities; pharmaceutical and technology companies; research registries; regulators like the HRA and Medicines and Healthcare products Regulatory Agency (MHRA); staff in universities and NHS organisations and clinical research organisations managing and coordinating research projects; and all those involved in disseminating and publishing research findings. These people and organisations make up a huge national effort to make the UK a great place to do and be involved in research. 

While we all have a part to play in making sure that research takes place in an open and accountable way, it makes sense that the HRA is the lead organisation for transparency. That’s because we review, in partnership with the devolved administrations, all health and social care research studies involving people, their tissue and their personal data - around 5000 studies each year – before they begin. We also set national policy for the conduct of research, laid out in the UK Policy Framework for Health and Social Care Research

Why do we need a strategy?

The UK Policy Framework describes how the different people and organisations involved in research are responsible for making it transparent. Other legislation describes the requirements for particular types of research, such as the EU Clinical Trials Directive, regulating the safety and effectiveness of medicines.

However, while transparency has improved over recent years, particularly in commercial pharmaceutical research, we know that practice doesn’t match the requirements and expectations. This is particularly so in non-commercial research, sponsored by universities and NHS organisations. 

The House of Commons Science and Technology Committee, during its 2017/18 inquiry into research integrity, focused on this issue of lower rates of reporting research results among non-commercial research. In its report, published in October 2018, the committee called on universities and NHS organisations to improve their performance. 

The committee also called on us, the HRA, to play a more active role in making this change happen. It set us a challenge to move away from encouraging best practice and instead to drive improvements. That’s what the strategy is all about. We have brought together a group of experts from different aspects of the research endeavour – the Research Transparency Strategy Group – to help us develop plans and proposals for consultation.

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About the consultation

Rather than publish a draft strategy and then seek comments on that draft, we want the public and research professionals to have more influence over the development of the final strategy. We have worked with the Research Transparency Strategy Group to develop the overall vision and what we see as our mission in delivering that vision, as well as a series of commitments. 

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 gather views, we’re running an online survey and holding a series of open workshops across the UK. We’re also seeking views from patient groups and Research Ethics Committees and the approvals staff who support them.

What we will do after the consultation

Once the consultation has closed, we will review the feedback we have received and incorporate it into the final strategy, which we expect to publish later in 2019. We will also publish a plan for implementing the strategy, working in partnership with key organisations to maximise its effectiveness. 

Navigating this consultation

The menu on the left allows you to move between different sections, or click on the blue 'next' buttons to work through the plan from start to finish. Alternatively, you can download a PDF of the consultation document.