Blog - Trust, Transparency and Data: A Co-Created Course for Researchers by Julia Shumway and Ruth Blackburn

‍Researchers Julia Shumway and Ruth Blackburn from the Health Data Research UK (HDR UK) Social and Environmental Determinants of Health (SEDH) Driver Programme worked together with members of the public to create an online course for researchers conducting public engagement related to place-based health data research. The course aims to help researchers to conduct transparent research with public buy-in and for public benefit.

Researchers are linking geographic data to healthcare records to help them study the relationship between people’s residential environments and their health. Because linking residential and health data poses a risk to individual privacy, researchers need to engage and foster the trust of the people whose data are being used.

Researchers set out to create an online course, in the form of five videos accompanied by written materials, to equip researchers to engage effectively with the public. Researchers worked volunteers from the HDR UK public advisory board (PAB) collaboratively create educational materials. The PAB is composed of members of the public with diverse skills, experiences, and perspectives relating to healthcare, including patients and members of industry. With a goal of co-creation, researchers sought PAB member input on the scheduling and formatting of meetings as well as on all educational materials.

Researchers and PAB members co-created a course which is now freely available on the HDR UK Futures learning platform entitled Unique Property Reference Numbers. The course incorporated knowledge generated by the SEDH Driver Programme and consists of five videos:

1.      Place-based data in health research. This video explains how linked health and place-based data can help us better understand the relationship between environmental exposures, such as indoor air quality or access to greenspaces, and health.

2.      What are Unique Property Reference Numbers? This video explains how unique reference numbers are attached to each property in the UK by local authorities and how those Unique Property Reference Numbers (UPRNs) are used to coordinate services.

3.      How are Unique Property Reference Numbers linked and processed in health data research? This video explains how UPRNs are linked to health records, including the governance and other methods researchers use to protect individual privacy.

4.      How are Unique Property Reference Numbers used in health data research? This video highlights research already using UPRNs, such as the Kids Environment and Health Cohort, in which researchers are studying the relationship between environmental factors, such as home overcrowding and fast food advertising, on children’s health and learning outcomes, including mental health, obesity, and educational attainment.

5.      Top Tips for projects using Unique Property Reference Numbers. This video consists of Top Tips for conducting public engagement contributed by PAB members. Some of these tips were drawn purely from members’ own experiences, and some tips were reflections or summaries of lessons members had learned while co-creating the video materials.

Members of the PAB reported having positive experiences, with their voices heard and their contributions and time valued. PAB members continued to support the project beyond its initial schedule, with one member, Alan Holcroft, being filmed for the Top Tips video, participating in the online course launch event, and promoting our project through a blog post.

Researchers found co-creation to be an enjoyable and beneficial experience. Co-creation led to a stronger course which incorporated HDR UK PAB member insights and experiences. PAB member participation enhanced materials’ credibility and built relationships of trust and mutual respect. Researchers who follow a similar model will find that engaging members of the public for co-creation improves their research’s integrity and impact.

We’d like to thank the HDR UK Patient and Public Involvement and Engagement (PPIE) Team who fostered researcher relationships with volunteers from the HDR UK Public Advisory Board and facilitated co-production sessions. We also thank the HDR UK Training Team for filming and editing all course videos and hosting them for free access on HDR UK Futures.