eCRUSADers has published a detailed researcher experience post from our TRACC Clinical Research Fellow Tamsin Nash, describing the process of building a linked dataset for her PhD on socioeconomic and ethnic disparities in cancer care quality. The cohort comprises around 500,000 patients diagnosed with cancer in Scotland between 2009 and 2024, drawn from SMR00, SMR01, SMR04, SMR06, PIS, SACT, Cancer Waiting Times, QPI and NRS deaths data, and linked to 2011 Census data via eDRIS and the National Safe Haven.
The account is useful reading for anyone planning a similar application. Because the project required both health data and Census data, Tamsin had to navigate two separate approval panels, the Health and Social Care PBPP and the Statistics PBPP, in sequence rather than in parallel, so that amendments to one did not cause the applications to diverge. She sets out the practical mechanics of this in some detail: sequencing the two submissions so that eDRIS could begin data preparation before the second approval came through, the different IG training routes required for health versus Census data (MRC Research, GDPR and Confidentiality training against ONS Safe Researcher Training), and the ethics route via University of Edinburgh sponsorship and a data-only protocol for the Census component, since NHS data accessed through eDRIS is otherwise covered by National Safe Haven ethics.
She is candid about timescales. Full details, including a table of PBPP stage timings from initial application in August 2023 through to data access in October 2025, are in the original post.
Read the full account on eCRUSADers: Researcher Experience: Tamsin Nash