Public involvement in HQIP data access celebrated in showcase
Published: 24 Jul 2024
HQIP was proud to be one of a small number of organisations to feature at Health Data Research UK (HDR-UK)’s Transparency Showcase in May 2024. This showcase celebrated the impact of projects designed to improve the transparency of processes for accessing health datasets for research, through adoption of pan-UK Transparency Standards. Following a successful bid for grant funding from HDR-UK to develop meaningful public engagement in our data access processes, we were delighted to present our project outcomes and achievements at the event.
As commissioners of the National Clinical Audit and Patient Outcomes Programme (NCAPOP), HQIP is a custodian of data from across many healthcare disciplines. The high quality and national coverage of our circa 40 national audits and registries means datasets are sought-after for a wide range of, potentially transformational, research and other purposes.
Transparent and clear information about safe and secure access to health data is fundamental to building and maintaining public trust, and promotes accountability. This funding enabled HQIP to review its data access processes and work with members of our Service User Network (SUN) to co-design a sustainable model for establishing public involvement within our Data Access Request Group (DARG) – for which we are delighted to be recruiting at this time.
Kim Rezel, Head of Patient and Carer Engagement at HQIP, explains how we got started: “At HQIP, we have a Service User Network of around 100 patients and carers, who support our work in various ways. For this project, we put out a call for involvement, and received 15 expressions of interest. We then worked with these volunteers to identify three engaged and enthusiastic SUN members to join the project team”.
Three SUN members (Wendy Davis, Sarah Markham and Mike Molete) joined Kim, Claudia Snudden (Clinical Fellow), and Yvonne Silove (Associate Director and DARG member) from HQIP to form the project team. Throughout the project, SUN members were fully involved in co-creating all the outputs, providing lived experience and promoting the patient and public voice throughout. More information about how this project was undertaken, and its results (including the poster presented at the showcase event), can be found in the following International Journal of Population Data Science (IJPDS) abstract: Developing meaningful public involvement in HQIP’s data access processes and Data Access Request Group (DARG).
This exemplar project forges the way forward in how to meaningfully engage patients and service users in understanding how their data is used. Wendy Davis, SUN and public project member, shares her thoughts on its innovative approach: “This project was genuinely collaborative. We could all speak openly and easily, working together throughout the life of the project”.
We are delighted to have also published a new video recounting the project, produced as part of Clinical Audit Awareness Week 2024, which can be viewed on HQIP’s YouTube channel: HQIP Mutual Benefits of Patient and Public Involvement. More information on our Service User Network, and details of how to join, can be found on the HQIP website: www.hqip.org.uk/involving-patients/service-user-network.
If you would like to learn more about the wider HDR-UK Alliance and the showcase event, further details can be found in the corresponding conference proceedings, published by the International Journal of Population Data Science (IJPDS).
This work was supported by the Health Data Research Alliance and Health Data Research UK (HDRUK2023.0456), an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities.
