Achieving proportionate governance review in Scotland: Threats and solutions

Diane M.A. Swallow* (Corresponding Author), Carl E. Counsell

*Corresponding author for this work

Research output: Contribution to journalComment/debatepeer-review


Background and Aims:
The effectiveness of any healthcare-related research governance system is dependent on its ability to identify, challenge and change practices that compromise its ability to deliver timely, proportionate review.
Methods and Results:
We present a case study outlining our experience of obtaining research ethics committee (REC) and Public Benefit and Privacy Panel (PBPP) for Health and Social Care approval to conduct a study which aimed to collect data on diagnostic and care pathways and determine the national prevalence of two rare diseases in Scotland. We discuss the threats posed to low-risk observational epidemiological research by disproportionate governance practices and propose practical solutions.
In the context of increasing investment, the ever-increasing barriers to doing high-quality, low-risk epidemiological research using patient-identifiable information is concerning. Information governance committees, guided by clinical researchers, must step up as leaders in this area, making use of flexibilities and opportunities within the law.
Original languageEnglish
Pages (from-to)74-79
Number of pages6
JournalJournal of the Royal College of Physicians of Edinburgh
Issue number1
Early online date2 Feb 2023
Publication statusPublished - Mar 2023

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Swallow received a clinical research fellowship jointly funded by the Chief Scientist Office (CSO) of the Scottish Government and PSP Association.


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