Blog: Our response to the Information Commissioner's Office's (ICO) consultation on new transparency guidance - by Dr Kirsty Edwards, Policy Manager

Last updated on 27 Mar 2024
photograph of Kirsty Edwards

Dr Kirsty Edwards, Policy Manager

At the Health Research Authority (HRA), one of our core functions is to promote transparency in research.

Transparency ensures that people are aware of how organisations use their information, so they can then make informed choices as well as exercising their information rights. Transparency is a key principle of the Data Protection Act 2018 (DPA 2018) and UK General Data Protection Regulation (GDPR).

We have a legal duty to promote research transparency and are taking a lead role on behalf of the research system to champion openness and drive improvements.

We state in our 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. You can read more in our Research Transparency Annual Report.

The ICO's public consultation

The ICO recently held a public consultation on new draft guidance to support health and social care organisations to be more transparent. It’s been developed to help health and social care organisations understand the ICO’s expectations about transparency.

The ICO is an independent body set up to uphold information rights in the public interest, and it covers a number of acts and regulations.

The public consultation ran from November 2023 to January 2024. We worked collaboratively with two public contributors from the Make it Public campaign group to co-ordinate our response.

The Make it Public campaign group includes a diverse range of core members and strategic partners. This allows us to work across sectors to champion transparency and work together to ensure information about research is publicly available for the benefit of all. You can read more about our plans in the Make it Public strategy.

Both public contributors very much welcomed this draft guidance and the positive impact it could offer. They also emphasised how important it would be for the ICO itself to be transparent in communicating and promoting this consultation, and the resulting new guidance, to the relevant organisations across the research sector.

Our response

We welcomed that the ICO had recognised the importance of patient and public involvement and engagement, especially the need to involve patient and public groups when developing and evaluating transparency materials.

But, we believe there is a need to go a step further to actively involve public contributors in producing and delivering transparency materials.

Public involvement at the outset is hugely valuable. When members of the public are embedded in the research, they better understand its importance which subsequently makes writing the transparency documentation easier, whilst also building trust. There is also an opportunity within the new guidance to showcase public involvement in the development of transparency materials through real life examples set in health and social care research.

Amander Wellings

Transparency in research builds trust within the public and encourages active participation in research. It also helps to ensure that taxes are invested in a way that suits the needs of the public, the end users of services, that are evidence-led.

Amander Wellings, public contributor and member of the Make it Public campaign group
Derek Stewart

Gaining the patient and public’s perspectives and opinions on transparency in health research is a vital reminder of why this is important and often helps ground such guidance in the day-to-day reality of our experiences. It also demonstrates the commitment of the HRA to actively involve us in policy making as much as possible.

Derek Stewart, public contributor and co-chair of the Make it Public campaign group

Linking resources

Our role as a regulator of health and social care research can support the aims of this new guidance. We can help signpost to the relevant audiences and tailor aspects of the guidance to the needs of health and social care research.

We also want to see the new guidance signpost researchers and funders to the HRA’s transparency strategy and Make it Public campaign.

The HRA offers guidance on transparency information to NHS research sites, we outline how to be UK GDPR compliant, and provide transparency wording for research sponsors to include when designing participant information sheets. It would therefore be beneficial for the new guidance to signpost to the HRA’s transparency guidance and templates.

Being crystal clear

In our response, we outline the importance of being clear about which parts of the new guidance only apply to controllers of health data, which applies to processors (acting under the instruction of a controller), and which apply to both. In a research context, this is especially important given the role of sponsor as controller, and research sites as processors, when personal data is processed for the purposes of research.

Finally, we ask for consideration to be given as to whether the current terminology is appropriate. For example, using words in the guidance regarding legal compliance with the principle of transparency, when different language is used in the legislation, could cause confusion.

Our desire is to work with the ICO on the next stages of development for this new guidance.

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