We welcome the Information Commissioner's Office (ICO) new guidance on transparency published on Monday 15 April 2024.
The aim of this guidance is to provide clear steps to ensure health and social care organisations are being transparent.
The ICO is an independent body set up to uphold information rights in the public interest and covers a number of acts and regulations.
The Health Research Authority (HRA) wants to make it easy to do research that people can trust, as set out in our 2023-2025 strategy.
Transparency is fundamental to establishing trust and promoting participation in research. This was made clear in our recent Public Perceptions of Research survey carried out by YouGov that highlighted the importance of people knowing how information about them will be used when it comes to making decisions about participating in research.
We are therefore delighted to see the importance of transparency reinforced by the publication of this new guidance by the ICO.
In our recent response to the public consultation we welcomed the ICO's acknowledgement to recognise the importance of patient and public involvement and engagement.
Derek Stewart and Amanda Wellings, public contributors and members of the Make it Public campaign group, told us of the need to actively encourage health and social care organisations to involve public contributors when producing and delivering transparency materials. So it is great to see public engagement processes on the ICO transparency checklist.
There is still some work to do though. We would like further clarification on which parts of the new guidance specifically apply to controllers of health data, which apply 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 a sponsor as controller, and research sites as processors, when personal data is processed for the purposes of research.
Our role as a regulator of health and social care research can support the aims of this new guidance.
The HRA offers transparency guidance and templates, we outline how to be GDPR compliant, and we offer transparency wording for sponsors when designing participant information sheets.
Our desire is to continue to work with the ICO to discuss how the new guidance will impact health and social care research going forward.
Deputy Director, Policy and PartnershipsNaho Yamazaki