Research Transparency Annual Report 2022/23

Last updated on 20 Mar 2023

Research Transparency Annual Report 2022/23 - accessible version

Executive summary

Since the launch of the Make it Public strategy in 2020, the research community has been working hard to make transparency the norm. More than ever, transparency continues to be key to the thriving health and social care research environment in the UK. We have made significant improvements and we should be proud that the UK research sector is seen as world leader in transparency; we still have work to do however.

Transparency about what research is going on, and what its findings are, is important for patients, service users and the public. It builds trust and accountability, acknowledges their contribution and encourages participation in research. Being transparent avoids duplication of effort and enables findings to be used to develop new and better treatments for patients and service users.

When we talk about research transparency we mean:

  • registration - making it public that a study has started
  • reporting results - making it public what the study has found
  • informing participants - letting those who took part know what the study has found
  • sharing study data and tissue - enabling further research

For this report, we have decided to focus on three important themes for transparency – feeding back to participants, publishing summary results and raising awareness of research opportunities.

We have reached out to the research community to provide some examples of best practice in these areas.

Although not a focus of this report we have made progress with our work on registering studies, with automatic registration now available for trials that are submitted for combined review. We also recognise that other organisations in the research system are better place to promote the appropriate sharing of study data and tissue, and we have continued to support them with this important work.

The case studies used throughout this report highlight the great work that is being done to increase transparency and provide an opportunity to share learning. This report also highlights the work we have undertaken to support researchers to improve transparency, and the progress the research community has made in fulfilling its requirements.

We will continue to support and encourage the research sector to be transparent and open, to deliver the benefits this offers everyone. This report provides a glimpse of the progress we, as a research community, can make over the coming years to fulfil our ambition to make transparency the norm.

A headshot of Dr Matt Westmore

Matt Westmore Chief Executive

Health Research Authority, Make it Public campaign group co-chair
a headshot of Derek Stewart, OBE Derek Stewart OBE, Patient Advocate, Make it Public campaign group co-chair

Derek Stewart OBE

Patient Advocate, Make it Public campaign group co-chair

Make it Public campaign group mission statement

Our vision is that trusted information about health and social care related research studies is publicly available for the benefit of all.

Why is this important?

Research in the UK should be visible to all so that:

  • patients and the public can access clear information about research findings
  • health professionals, commissioners, researchers, policy makers, funders and patients can use research findings to make informed decisions
  • patients, service users and carers can see what research is taking place and join in or get involved in the design, conduct and dissemination of study findings avoidable waste and duplication are reduced

When research is visible, the public can trust study findings and in turn researchers are more accountable.

We will know we are being transparent and trustworthy when:

  • information about research is made publicly available at the start
  • the findings of all research are made publicly available at the end of the study
  • everyone who took part in the research knows what the study found
  • study data and tissue collected as part of research is shared for future studies

How will we achieve this?

These are long term goals and we have already improved transparency practice, but there are still gaps and opportunities for more progress to enhance research transparency.

Different types of research and different parts of the research community are at different stages of the journey to achieve them. Coordinated cross-sector collaboration will help us to meet our vision.

Feeding back to participants

Feeding back to participants as a research study progresses, and giving information about the findings of the study when completed, are key aspects of research transparency. The UK Policy Framework for Health and Social Care Research says:

‘Information about the findings of the research [should be] available, in a suitable format and timely manner, to those who took part in it, unless otherwise justified.’

We believe that keeping participants updated and informed as a study develops, as well as with the results at the end, should be the norm.

When researchers work with patients and the public to plan individual studies, we hear that recruitment is easier, participants are better supported, and findings are more relevant to patient needs. Ongoing communication between researchers and participants throughout a study can offer further improvements. This strengthens relationships, and creates more opportunities for feedback and improvements to be made in the way findings are shared.

UCL COVID-19 Social Study

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In March 2020, the University College London (UCL) COVID-19 Social Study set out to understand the psychological and social impact of the pandemic. Through weekly surveys they collected information on a wide range of topics such as social demographics, people’s health conditions, isolation status, trust in government and health services, and how people spend their time generally.

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The surveys ran until April 2022. In total, over 73,000 participants took part and over 1.2 million surveys were completed during the two-year study period. The study team also conducted over 400 in depth qualitative interviews. The UCL team used the information collected through surveys and interviews, to publish over 40 public reports and over 100 scientific papers with about 1,000 media posts informed by the research. The team also used study findings to consult the Cabinet Office, multiple government departments and the NHS. To date, the study is one of the most widely used social science data sets from the pandemic to inform national policy.

Transparency highlights

From the outset, participants were regularly kept informed of the response to the research and how their involvement in the study was having an impact. The research team regularly sought feedback to better understand what worked for participants and why they felt invested in the study.

Feifei Bu, quantitative lead for the study said: ‘the commitment of participants was truly remarkable. We maintained a connection with them right from the start and felt their support throughout the study. It was a great example of the importance of public support for effective research.’

The study team sent a newsletter once a month to highlight significant findings from the previous month’s survey, as well as upcoming research and future survey questions. It also introduced participants to members of the research team.


Participants commented that the study felt collaborative from the very beginning. They gave feedback which highlighted the extent to which participants felt the research team had invested in them. Many participants commented that during such a stressful time they really valued having a group of researchers who cared about how they were doing. Participants had a sense that they were contributing to something really important and that the study could make a difference during a challenging time.

The study benefited enormously through the high level of retention and commitment from participants. Researchers were able to recruit and retain a diverse group of participants as a result of the attention given to communicating with participants effectively. The research team also recruited participants for future studies. This willingness to sign up to potential future research was likely as a result of how the team interacted with participants throughout the study.

What would you tell other studies?

Alexandra Burton, qualitative lead for the study said: ‘We have to change our attitudes as academic researchers and think about publishing results in real time… [academic papers were] fully available to see, critique and ask questions about before they were accepted in academic journals…’

There needs to be planning and sufficient resource allocated to ensuring participants are kept informed throughout a study, including set roles and responsibilities. Embedding plans in the protocol and project plan, will ensure researchers follow through on their commitments to inform participants of results.

INHALE Project

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The INHALE study looked at whether using molecular diagnostics to diagnose hospital-acquired and ventilator-associated pneumonia in Intensive Care Units, could promote better use of antibiotics and reduce antimicrobial resistance. The study was funded by the National Institute for Health and Care Research (NIHR).

Following an initial observation of three tests, a polymerase chain reaction (PCR) test was taken forward to a randomised controlled trial. The aim was to see if using this PCR led to more targeted, improved use of antimicrobials. The study completed recruitment in August 2021, having recruited 558 patients altogether.

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Antimicrobials – including antibiotics, antivirals, antifungals and antiparasitics – are medicines used to prevent and treat infections in humans, animals and plants. Antimicrobial Resistance (AMR) occurs when bacteria, viruses, fungi and parasites change over time and no longer respond to medicines making infections harder to treat and increasing the risk of disease spread, severe illness and death.

Transparency highlights

Penny Vicary, a member of the study’s patient and public involvement (PPI) panel, said: ‘the most exemplary and transparent part of our relationship, for me, has been the willingness to listen and to change, based on our feedback… giving us the opportunity to meaningfully support in this area.’

A significant achievement of the study is that it has had the same supporting PPI panel from the outset. Over the course of the study, this PPI group and researchers met over thirty times, both in-person and online. This consistency in communication and relationships has allowed for collaboration across all aspects of the study, especially in developing engaging ways to feed back to participants.

Participants were given the option via the initial patient information sheet to say they wanted to receive feedback of the end results of the study, with a link to the study website.

In addition to more traditional methods of feeding back – newsletters, thank you letters and written reports of results – the study team took a number of creative approaches to feed back about the study to both participants and new audiences. The team produced a game, suitable for a range of people, to tell them about the study. Members of the PPI panel wrote a poem about the study and their experiences.

It was shared with participants and performed more widely at conferences.


The study benefitted greatly over its long lifetime because of the close, transparent working relationships and constant feedback between researchers, the PPI panel and study participants. An example of the tangible difference made though these relationships is the decision to use a more diverse range of hospitals for the basis of the study. Contributions from the PPI panel also led to a significant rewrite to improve the study’s lay summary, making it clearer and more accessible.

Dr Vicky Enne and Charlotte Russell, of the INHALE programme research team, said: ‘it’s been really helpful to receive all the feedback. Over the years we have introduced and changed a lot for the better following the contributions of the PPI members and participants. Keeping us in check about our communications and how we speak to people has also been very helpful.’

What would you tell other studies?

In order to generate this valuable feedback and conversation between a study and its participants, there needs to be proper resource to support PPI members and participants in this task. This includes making sure opportunities to contribute are inclusive, such as ensuring those who do not have internet access are given appropriate ways to contribute. Giving participants choice and flexibility on how they can be involved, as in this study, is a central reason why feedback has been so rich and helpful.

Penny Vicary and Amander Wellings, members of the PPI Panel, said: ‘Funders need to be aware of the resourcing required, to get the most out of PPI… this openness takes a lot of effort and time. There is major need for personnel and funding to support PPI in a meaningful way.’

Studies should also plan for long-term management of materials and webpages attached to the study. Having a dedicated or experienced member of the study team, knowledgeable in communications and familiar with online resources, is essential to making sure online resources for participants and public stay active, relevant, useful – and transparent.

COVID Voices study

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The idea for the COVID Voices study came from two patient and public contributors, Lynn Laidlaw and Joyce Fox when they became involved in some COVID-19 data research conducted by the Centre for Epidemiology, Versus Arthritis at Manchester University. They wanted to bring the mainly quantitative data about shielding for people living with Rheumatological conditions to life, using qualitative methods. They collaborated with Dr Charlotte Sharp and co-produced the research using interviews and focus groups. People were also invited to submit creative materials.

A patient advisory group (PAG), made up of four people who would have been eligible to participate in the study, was established to support the research. The PAG met four times and assisted with identifying and analysing themes from the interviews and focus groups, and with writing up the results.

People were recruited through social media and interviews took place between October 2021 and January 2022. Giving people the choice of how they wanted to participate (interviews, focus groups or submitting creative materials such as drawings and poetry) was important to support inclusivity.

Lynn Laidlaw said: ‘We weren’t just saying to people, this is how we want you to contribute... [instead] they had some choice and power…and that felt really important.’

Transparency highlights

The core research team, Charlotte, Joyce and Lynn, co-produced the research, working in a values and principles led way, as equal partners. Co-production aims to ensure that research is as meaningful and relevant to patients and the public as possible.

The research team included a question in the consent form asking participants whether they would like to be kept informed of the research findings.

100% of participants gave their consent for this.

When the study had preliminary results, participants were invited to a Zoom call to share the results with them at a ‘celebration event’. They have also shared the results widely at conferences and forums, including reflections on co-producing research in this way. They kept in regular contact with the participants throughout the research, and all papers and publications will be shared with them.

What would you tell other studies?

Charlotte Sharp said: ‘I learned a lot from Lynn about the time and trouble that she took to reply to people individually. The study, and the feedback we received, showed that it is really important to communicate with participants throughout the study. It is important to be aware of the effort it takes to keep participants informed. Proper resourcing and planning are paramount. It needs to be embedded in the project plan and the protocol. That way if you say you are going to do it, then you have to follow through.’


The celebration event provided a good ‘sense check’ for the researchers. It gave the participants in the research an opportunity to comment on the findings and share what the research meant to them. They sent round an evaluation questionnaire after the celebration event, which was completed by 21 out of 29 attendees, 80% rated the celebration event as excellent.

When interviews were finished, everyone was emailed thanking them for their time. For people who couldn’t attend the planned celebration event, there was an effort to share the presentation and to meet them separately. A priority was placed on giving people as many ways as possible to stay in touch.

Lynn Laidlaw said: ‘I volunteered to take on the role to ensure the study kept in touch with participants because it was personally really important.’

The focus groups in particular offered people a point of shared experience which they found very cathartic over and above contributing to research. Feedback from the celebration event highlighted how important this was for participant’s mental health. Many people felt isolated while they were shielding and appreciated having the opportunity to share their experiences.

The research team felt that keeping participants updated, holding and evaluating the celebration event had multiple benefits, as one of the participants commented: ‘It’s lovely to see the value of your effort and makes you more likely to take the time to contribute again’.

Publishing summary results in an open and accessible way

The UK Policy Framework for Health and Social Care Research sets out the expectation for the results of individual research studies to be shared publicly:

‘Other than research for educational purposes and early phase trials, the findings, whether positive or negative, [should be] made accessible, with adequate consent and privacy safeguards, in a timely manner after they have finished.’

We believe that publishing summary results – not just of trials, but of all research – in an open, accessible and public way is a key factor in ensuring research is transparent. Publishing results in a peer-reviewed journal is not always achievable, and findings published in this way may not be accessible to the public.

Making the results of research studies public and as easy to access as possible helps builds trust and accountability, whilst ensuring participants are protected from unnecessary studies. It is also a process that helps ensure research funding is maximised by avoiding duplication.


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AbbVie aim to ‘make a remarkable impact on people’s lives and do this through discovery and development of innovative medicines and healthcare approaches for a healthier world’.

A critical component of developing medicines is clinical research. There are important health benefits in making clinical trial data and information available to health care providers, researchers, patients and the public.

Transparent and secure sharing of clinical data supports AbbVie and the clinical community to better understand areas of disease and standards of care being received by the populations they serve. Without patient data there can be no research. With transparency we can each appreciate and make the most of this valuable resource that is entrusted to the research community.

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

There have been improvements in publishing and making data publicly available. Transparency is crucially important for the patients and participants that take part in research, to help them understand what the outcome of the research was, how it has helped to support better understanding of the disease state and potential new treatment options. Transparency builds trust. If patients understand the benefits of a trial, it builds confidence in taking part in future studies. This is particularly important to help diversify the range of people involved in clinical trials.

AbbVie recognises the benefits of sharing our clinical trial information with researchers. Qualified researchers engaged in rigorous, independent scientific research can request access to anonymised clinical trial data. Access to data is determined based on the scientific merit of the research proposal and is facilitated through Vivli, which is an independent, nonprofit organisation that has developed a global data-sharing and analytics platform.

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

Continued developments in data standardisation, interoperability and analytical methods will enable researchers to realise the vision of research transparency and better serve patients in need. At present, too much research relies on ad hoc and bespoke methods for small datasets.

New platforms offer researchers unprecedented scale, efficiencies and opportunity to address research questions that we cannot yet conceive.

This will enable more, better and faster research to address areas of uncertainty across the clinical community.

Sharing data is fundamental to research and development but it is our shared responsibility to minimise risk. Recently the NHS announced a new data access system to enable better data sharing. Professor Ben Goldacre’s independent review ‘Better, broader, safer: using health data for research and analysis’ sets a powerful vision for improvements in analysis of NHS patient record data. Starting soon, the NHS will provide secure access to data to approved researchers within the security perimeters of a Trusted Research Environment (TRE).

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

Data formats and vocabularies vary extensively between databases. Common Data Models (CDM) and Reproducible Analytical Pipelines (RAP) are means and best practices to standardise data into a common format for collaborative and large-scale analytics. Increasing experience with such tools will give researchers more confidence to share and re-use standard analytical code. Simplifying programming in this way will improve efficiency, reproducibility and research transparency.

  • Reproducible Analytical Pipelines (RAPs) are automated statistical and analytical processes. They incorporate elements of software engineering best practice to ensure that the pipelines are reproducible, auditable, efficient, and high quality.
  • Common Data Model (CDM) is an open community data standard, designed to standardise the structure and content of observational data and to enable efficient analyses that can produce reliable evidence.

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

Successful implementation of new standards and secure data platforms for the analysis of research data will help to embed research transparency as the norm across the UK. Working together towards this goal will help drive research, innovation and better patient care.


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The EQUATOR Network is an international organisation aiming to enhance the quality and transparency of health research. Its main focus is how researchers write about and describe its health research in venues like journal articles, which is called reporting. Complete reporting is a vital step in open research. If researchers share their data, code, and summary results, but don’t include a clear, complete description of how they collected this data and analysed it, then readers won’t be able to understand and use the bits that have been shared.

Its five centres (in Australia, Canada, China, France and UK) work towards their goals by investigating research quality and transparency, developing guidance for researchers, promoting reporting guidelines and providing training. Reporting guidelines are writing tools, giving lists of information that readers need about a particular study design. The UK EQUATOR Centre also leads EQUATOR’s awareness-raising through their website of online resources and social media.

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

We’ve seen a general push towards open science practices from funders, researchers and journals. For example, the academic community has been talking about when data sharing is appropriate and how to accomplish it, and journals have started asking authors to explain if and how they will share data. We’ve seen a rise in preprints and registration of non-trial research on platforms like Open Science Framework (OSF). We work in meta-research, which is the study of research practices. Here, the reach of open science principles has become a topic of interest.

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

Many data-sharing statements ask readers to email authors, with no further guidance. We need transparent pathways for readers to access data and for that data to be shared with enough background information to explain what it is and isn’t, so that it can be used.

We’d like to see transparency principles embedded as criteria in career progression and funding decisions. The things we reward are the things that people will do.

We’d also like to see improvements in how reporting guidelines are developed and shared with potential users, using friendlier formats to facilitate complete reporting.

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

We need to make it easier for authors to meet minimum reporting guideline recommendations, so that their journal articles are complete, transparent records of their research. We are investigating whether writing templates might help researchers. Journals and funders could also offer online forms, like those used to collect information on patient and public involvement. Funders and institutions could offer practical support, such as training, written guidance and specialist staff members to support researchers in meeting transparency standards, as is done for finances, grant applications and communication.

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

We need the entire research ecosystem to work together. There isn’t one thing that will help, or one group of people who hold the responsibility for transparency. Instead, all of us need to be working together towards this common goal – researchers, supervisors, research organisations and universities, funders, journals and government entities.

Two things that could really help are ensuring training from the start of people’s careers and embedding transparency in career progression, so that we reward the behaviour we say is desirable.

Chief Scientist Office Scotland

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The Chief Scientist Office (CSO) is a division within the Scottish Government that aims to promote, support and fund research that addresses the health and healthcare needs of Scotland.

As a funder, CSO ensures that outputs resulting from the research it funds are disseminated as rapidly and extensively as possible, speeding up the rate at which important research findings are translated into clinical practice for the benefit of all.

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

In 2022, CSO further developed its commitment to research transparency. As of 1 June 2022, CSO instated an open access policy that requires all peer-reviewed research articles arising from CSO grants and fellowships to be immediately, freely and openly accessible to all. This complements other open access policies of NIHR, AMRC and UKRI.

CSO also became a member of the Ensuring Value in Research (EViR) Funders Forum in 2022. EViR members collaborate to advance the practice of health research and funding in order to increase the value of this research. Part of maximising research value, and one of EViR’s guiding principles, is to promote open, transparent research and ensure that research outputs are productively disseminated. This strongly aligns with CSO’s aims as a funder, and it is hoped that by working with EViR partners, research outputs are made more accessible and disseminated more effectively.

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

CSO would like to see patient and public involvement (PPI) being more widely incorporated in projects and included from an earlier stage in research project development. With the help of the lay members from our Public Engagement Group on our funding committees, we assess the amount and quality of the PPI in all our grant and fellowship applications.

In the two-stage grant process we have the opportunity to feed back to those invited to full application and when we feel that the PPI needs to be improved then this is communicated.

Fellowship applicants are questioned on their PPI and successful Fellows are encouraged to uptake our offer of PPI training. It would be expected that this greater focus on PPI would lead to improved research, and that more projects will use PPI input in their following ethics submissions - which will hopefully lead to faster ethics approvals so the research can progress more efficiently.

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

Funders striving to assist and encourage researchers to adopt more transparent practices could help make research transparency easier.

For example, under the open access policy, potential open access fees that CSO-funded researchers may be required to pay to some publishers will be reimbursed by CSO (up to £8,000 per grant award).

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

A more widespread adoption of open access policies by funders may help encourage research transparency throughout the research community. Starting productive discussions (such as through the Make it Public campaign) with diverse stakeholder groups that are found within the research community – including patients, researchers, funders, sponsors and the wider public – will hopefully normalise transparency at all stages of the research process.

Raising awareness of opportunities to get involved in research

The effectiveness and relevance of research is improved when opportunities to be involved in research are made more visible, open and accessible to the public. This is because it gives a study the best chance to involve the full range of people who will benefit from the outcomes of research.

By having research opportunities more publicly available, researchers will be able to recruit and retain a wide, diverse range of research participants. As a result of increased diversity and better opportunities to access research for more people, research will be more relevant, effective, trusted and transparent.

At the same time, health professionals, commissioners, researchers, policy makers and funders can use research findings to make informed decisions, which will enhance public trust in research evidence and enhance public accountability.

It is equally important to have an awareness and understanding of potential barriers that may restrict members of the public getting involved in research. Identifying these challenges and putting measures in place to counter them is therefore essential in the delivery of transparent research.

National Institute for Health and Care Research (NIHR) - Be Part of Research

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Be Part of Research is a service to help the public across the UK find out about how they can take part in health and care research, and to help researchers find interested volunteers to help with studies. It consists of a website, where people can search for health studies by condition or location, and find out more about how to get involved in shaping or taking part in research. There is also a monthly newsletter, featuring information about opportunities to take part in studies and get involved in research, together with stories about the impact that people taking part in research have made in generating evidence for better care.

Be Part of Research will soon be launching new features which will enable people to sign-up to be contacted about suitable opportunities that meet their interests for studies that are recruiting near them.

The NIHR is focused on ensuring their service contributes to delivering accessible and equitable research opportunities for all.

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

Following the pandemic, there has been a real appreciation of the public’s role in research. Over half a million people came forward to support the COVID-19 vaccine trials through the NHS Vaccine Research Registry, and the research sector couldn’t have developed the vaccines, treatments and improvements in care without the willingness of the public to contribute. This has put added impetus behind the existing drive for transparency - the public need to be given all the information they need to make decisions about taking part in research and about their health and care.

The approach taken with vaccine research - to enable people to register an interest to hear about research opportunities near them, and its findings - is now being replicated across every disease area with the exciting new functionality coming soon to the Be Part of Research service. Be Part of Research is committed to providing trustworthy information to the public. We do this through working closely with NHS England and with other organisations who have the same values and dedication to providing transparent and trustworthy sources of information and signposting to the public.

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

We would like to see much better lay summaries of research studies to be available. They need to be written free of medical jargon and focus on the issues that concern people, that are clear as to why they are conducting the study, what it involves and who they are looking to take part.

If this information was more accessible, easier to understand and more widely available, more people affected by a particular condition and a wider range of people would come forward, leading to better quality research and a more efficient research system. Members of the public are vital partners to research teams in helping to shape research, including areas such as developing lay summaries and ensuring study materials are suitable for the communities we seek to serve.

It’s essential that we involve members of the public at every stage of the research process.

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

A public web-based database of research studies with information about every stage they are at and a link to published research at the end, written in lay language.

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

A clear link to ethics approval, to require commitment to transparency at key stages such as in the lay summaries and recruitment materials, communication to participants and publication of results.

Maidstone and Tunbridge Wells NHS Trust - Patient Research Champion

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The Patient Research Champion role (previously known as Patient Research Ambassadors) was set up at Maidstone and Tunbridge Wells NHS Trust to raise awareness among patients and the public that they were part of a research active trust.

Working with other volunteers in this role, a Champion provides a support service to patients involved in research trials. The role supports healthcare and research staff to understand more about the experiences of those taking part in research, as well as more broadly on promoting the importance of research to healthcare providers and the wider public.

Recently, a service evaluation was undertaken to get a better understanding of the impact of Patient Research Champion on research programmes.

Transparency highlights

The Champions service took a practical approach to increasing visibility of the information about the trust being research active, as well showcasing the Champions role itself. A leaflet was put together and distributed throughout wards, outpatient clinics and elsewhere to raise of the role within the trust. This included working closely with the volunteer service within the trust to promote both the Patient Research Champion role and the wider research opportunities. The role was highlighted via social media channels and at sub committees of the Board to raise awareness of research participant views to ensure they helped form service changes.

Developing a strong relationship with the wider volunteer service was key. The volunteer service played an important role in highlighting if there is someone who may be suitable for the Patient Research Champion role. The Patient Research Champion have played an active role in trust events and celebration days, both to raise awareness of the importance and nature of research opportunities in the trust, and of the Champions role itself.


A key benefit and feature of the Patient Research Champion scheme is that it is run and directed by volunteers on the activities it does. This gives the scheme a unique perspective on how to raise awareness among patients and the public, as the approach is guided by those recruited from that audience.

Another key benefit of the scheme is that it allows for conversations and opportunities outside of those with consultants and other medical staff. Similarly, if an individual has raised interest in being involved in research, the Patient Research Champions scheme will begin the initial recruitment, subsequently giving the consultant or researcher more time with the patient to focus on the research.

In short, the scheme helps ensure consultants, researchers and patients get the most out of their conversations on involvement in research.

What would you tell other studies?

Frances Mossie, Lead Patient Research Ambassador, said: ‘Since COVID-19, the public are much more aware of research and are happier to be involved. However, it is important to remember that it is voluntary to be part of research. You need to give people space to consider the information. Providing information in different formats and in plain language can help raise awareness and enable good discussions between patients, researchers with consultants.’


We stated in the Make it Public strategy that we would publish transparency performance from the research community. This allows us to celebrate good practice and highlight poor performance.

We are building a new system to collect data and monitor final reporting for all types of studies. Until it’s ready, we’ll be reporting the number of final report forms completed, even though this is not a perfect measure.

It’s always been a requirement that studies submit a report 12 months from the end of study. In September 2021, we introduced a new standard final report to make it easier to report on and measure transparency across research. Using data from the final reports we have received between September 2021 and September 2022, the data sets out progress against the first three pillars of research transparency – registration, reporting results, and informing participants.

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*This number is not indicative of the final reports that should have been submitted in this period and will include final reports which were submitted outside the 12 months from end of study timeframe.

Make it Public Patients with medic


Making studies visible before recruitment begins can reduce waste and protect participants from unnecessary research.

All research should be registered in a publicly accessible database. For clinical trials, it is a condition of a favourable ethics opinion. It is good practice for all other studies. During the period September 2021 to September 2022:

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*This number is not indicative of the final reports that should have been submitted in this period and will include final reports which were submitted outside the 12 months from end of study timeframe.

51% of those registered were commercial sponsors and 36% were non-commercial. 14% did not indicate whether the sponsor was commercial or non-commercial.

Automatic registration

All clinical trials of investigational medicinal products (CTIMPS) and combined trials of an investigational medicinal product and an investigational medical device (IMP / device trials) submitted on or after 1 January 2022 for combined review in the new part of IRAS are automatically registered on ISRCTN Registry.

From 1 January 2022 to 1 January 2023, 156 CTIMPS and IMP / device trials have been automatically registered unless a deferral is agreed or the trial is registered with instead.

Reporting results

When studies have finished, it’s crucial that the results are reported.

Reporting results for all studies, whatever the outcome, prevents duplication and research waste. It also ensures that results can be used to inform policy or care that further improves health and wellbeing. High quality research, even where outcomes are negative or inconclusive, should always report results so that they are publicly accessible.

Published results

During the period September 2021 to September 2022 the data we collected for published results was:

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*This number is not indicative of the final reports that should have been submitted in this period and will include final reports which were submitted outside the 12 months from end of study timeframe.

53% of those were commercial sponsors and 33% noncommercial. 15% did not say whether the sponsor was commercial or non-commercial.

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Provided lay summary of results

Trusted information from health and social care research studies should be publicly available for the benefit of all. Information about research findings should be available to those who took part in the study, interested groups or communities and the general public in a format that is accessible and easy to understand. This also makes it easier for health professionals, commissioners, policy makers and funders to access and use the findings to help make informed decisions and so improve the nation’s health.

As part of the HRA’s research transparency strategy we ask research sponsors to include a plain language summary of their findings in their final report. These plain language summaries will then be published on our website alongside the study research summaries.

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*This number is not indicative of the final reports that should have been submitted in this period and will include final reports which were submitted outside the 12 months from end of study timeframe.

46% of those were commercial sponsors and 42% were noncommercial. 12% did not indicate whether the sponsor was commercial or non-commercial.

Public disclosure of clinical trial results – WHO guidance for reporting summary of results in clinical trial registries

The public registration of clinical trials, and the timely and full reporting of their results, are internationally accepted measures to promote transparency, identify existing trials, deter selective reporting, and increase the value of clinical research. The World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) led the development of international norms and standards for trial registration in 2006, and later added elements on reporting of results in version 1.3 of the WHO Trial Registration Data Set.

There is substantial variation in the elements of summary results collected by trial registries. To promote consistency, an ICTRP-led team has drafted recommendations for the minimum elements of study results that should be reported in trial registries. The WHO ICTRP conducted a consultation in 2022 to get feedback from stakeholders. The HRA is continuing to liaise with WHO and MHRA to explore whether this guidance can be adopted in the UK when it is finalised.

Informing participants

Finding out about the outcome of research is important for patients, service users and healthy volunteers who take part in research.

It respects their contribution to the study and means they are more likely to take part in future health and social care research.

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*This number is not indicative of the final reports that should have been submitted in this period and will include final reports which were submitted outside the 12 months from end of study timeframe.

Of the studies who informed participants of study results, 50% were clinical trials.

Communicating study findings to participants: guidance for researchers

Researchers told us they would value advice on how to let people know about the findings of the study they took part in. We have developed guidance on communicating study findings (results) to participants.

This guidance is for researchers and sponsors who are responsible for sharing findings to participants.

How you share study findings with participants will vary depending on the type of study, however this guidance will help researcher and sponsors to plan the best way to do this.

The year ahead

Over the next 12 months our campaign group will continue their work to make transparency the norm for health and social care research.

March 2023 saw Make it Public Week, the first ever week dedicated entirely to research transparency.

The week brought together triallists, sponsors, funders, patients and research participants to celebrate best practice and commit to working together to build a culture of transparency, so that trusted information about health and social care research is always made public.

Following a public consultation, new legislation for clinical trials in the UK is being developed. This work is an exciting opportunity to improve research transparency, and we’re developing new guidance to support researchers through changing expectations that will have transparency front and centre.

You can follow the progress of the Make it Public campaign by visiting the HRA website.

If you have any comments or questions about anything in this report please email

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