What began as something so undesirable as a worldwide pandemic has become a catalyst for a coordinated, UK-wide approach to COVID-19 research, the National Core Studies Programme. It had become clear that not only more but better data were needed to inform effective and appropriate measures to prevent and control the spread of this coronavirus and the management of COVID-19 and its consequences. There are five core studies charged with making these discoveries and all of them are underpinned by a sixth study, Data and Connectivity.
The Data and Connectivity Study is co-led by HDR UK and the Office for National Statistics and is responsible for linking relevant health, social and administrative data and making it available to the other core studies to answer priority research questions. This is being made possible by the Delivery Group and well-planned monthly Sprint projects. My involvement began at the beginning when I responded to a request for public and patient representatives to attend the initial planning meeting at the end of August where it was made explicit that there would be absolute transparency and public and patient involvement (PPI) from Day 1. Although the content of the Delivery Group meetings would primarily be technical, it was apparent to me that PPI was needed if only to monitor study developments and to ensure that trustworthiness in the use of these data was demonstrated and to ensure that benefit to the public was paramount to all endeavours. I then agreed to become a member of the newly formed Delivery Group.
During these fast-paced weekly meetings, I have had the opportunity to raise questions and concerns along the way. I have inputted that an essential component of meaningful transparency is information about what the relevant datasets contain, how they are anonymised and how they are linked is shared in a way that is accessible to the public. It’s important to highlight that much of the related PPI work such as these lay descriptions, led by the HDR UK PPI Manager, takes place outside of the weekly Delivery Group meetings. I have been able to contribute to these as well such as providing feedback to HDR UK on their rapid research call for projects to enrich the use of these newly linked datasets, which was launched on 24 November. The outputs of these activities are then fed back into the Delivery Group to take on board and/or shared with the other core studies as appropriate. Other developments in the pipeline are inviting other public/patient representatives to become involved with the Delivery Group and a steering group of Public Advisory Board and other COVID-19 PPI members. Both of these initiatives will help to broaden PPI input to the study meetings and will provide support to those of us attending them.
My original expectations of monitoring the Delivery Group meetings and acting as a conduit to the Public Advisory Board have been exceeded when I was invited to be a member of the Assessment Panel for choosing the above-mentioned data enrichment research projects. This is an indication of commitment to genuine public involvement in important decision-making processes and enhances the study’s other approaches to ensuring public benefit and honouring their side of the social contract in using the public’s data.