At the BHF Data Science Centre, we work with patients and the public to ensure our work is relevant to patients affected by heart and circulatory disease, and the public as a whole.
It also ensures we develop trustworthy methods of accessing and using UK-wide health data to inform improvements in heart and circulatory health.
Four public contributors support our Cohorts area of work and have been involved with the development of the Cohorts Trusted Research Environment (TRE).
A cohort is a group of people who take part in a research study. A TRE is a highly secure computing environment that provides remote access to health data for approved researchers to use in research that can save and improve lives.
Our public contributors have worked with us to develop information for patients and the public. The group has co-developed a series of frequently asked questions (FAQS) which will help members of the public understand what a TRE platform is, how patient data is kept secure and who can access this data via the TRE platform.
These resources will feature on the Cohorts section of the BHF Data Science Centres website.
Here Anwar Gariban, one of our dedicated public contributors, explains more about his involvement with this work and how he thinks public involvement has made a difference.
Plain English
As a public contributor involved in the Cohorts Trusted Research Environment (TRE) platform, my role extended beyond mere data collection, storage, and utilisation.
As a lay member, I recognised the importance of demystifying the complexities of TRE for the public by ensuring it was written in clear plain English.
Anwar Gariban
Enhance understanding
The FAQs aim to explain the purpose of the TRE, emphasising how researchers could utilise cohort data to enhance the understanding of cardiovascular disease progression, the prevention of cardiovascular issues and the discovery of innovative treatment approaches.
Collaboration
The development of these FAQs was a collaborative effort. Our voices were heard, and suggested changes were carefully considered in the final versions. We had ample opportunities to discuss the FAQs during meetings and through online feedback.
To instil confidence in data collection, the Patient and Public Involvement and Engagement (PPIE) team ensured that the “Five Safe” principles of TRE were explained in straightforward language. This summarises the framework that is applied to ensure that data is only accessed by those who have appropriate knowledge, skills and security training and that data is accessed and analysed in a secure and trustworthy way.
Public Trust
As a result, we can reassure patients about robust governance and data protection processes that are in place for the TRE. PPIE ensured patient perspectives were represented.
Our contribution to the FAQs is hoped to foster public trust and encourage participation in the TRE platform. This, in turn, contributes to richer research datasets, benefitting cardiovascular care and treatment.
Anwar Gariban
Next steps
The Cohorts TRE platform will be launched later this year. The public contributors will continue to play a role in assessing the suitability of cohorts who want to make use of the TRE and supporting the centre in communicating the benefits of this work to the public.
Please keep in touch and follow us via our Cohorts page HERE. If you would like to find out more about our work with patients and the public, please visit our PPIE page HERE.
