Information Governance Case Studies
To aid the ongoing review of Information Governance processes within NHS Scotland, IHDP, in partnership with Cancer Research UK (CRUK), collected diverse case studies. These case studies came from a wide range of academics and clinicians who access, use and share cancer data, and from those controlling this data.
The Data access systems in NHS Scotland: experience of cancer data utilisation projects report
This report gathers fifteen examples that illustrate the difficulties in navigating the current Information Governance landscape in everyday practice in Unit, Health Board, Regional and National settings.
Eight of the fifteen contributing projects had submitted applications to the Public Benefit and Privacy Panel (PBPP). PBPP is a patient advocacy panel that scrutinises applications for access to NHS Scotland health data for purposes other than direct patient care.
Despite the disparate nature of the requests, the experiences and reflections reported were remarkable consistent:
- Insufficient clarity and transparency in Public Benefit and Privacy Panel processes.
- Inordinately long timescales from Public Benefit and Privacy Panel submission to outcome.
A clear, simple and transparent Public Benefit and Privacy Panel process, with a single point of contact for guidance and advice, could improve the efficiency of the process. Specific forms for the use of data for specific purposes (e.g., research, audit, tool creation) could also help. Improved efficiency would also help speed up research and innovation opportunities.
Key Challenges:
- Ensuring that Information Governance processes do not restrict the use of data to maximise public benefits.
- Finding a balance between protecting the individual and using data to improve outcomes for the current and next generation of patients.
