Clear, consistent rules and practices for information governance (IG) are critical to the success of any project based on the sharing of data about an individual’s health. The purposes for the data were often mixed, including research, service re-design, and direct care so being clear about how data is shared and used can be complex to describe. Creating a single approach to IG for all the CHC regions was important to ensure that they had the appropriate legal basis and permission for sharing and use of sensitive health data. The CHC Hub worked with all the CHC regions to establish an Information Governance working group to share expertise and develop a framework for managing the secure sharing of data in order to successfully deliver the CHC pathway projects.
The development of the unified approach for safeguards to protect data meant that all the CHC regions were able to work to the same standards, which had also been tested for acceptability with both the public and IG experts and their implementation monitored through the working group. This ensured that regions could be confident that their approach to privacy was sufficient for the purposes for use of the data.
Chaired by Clare Sanderson, a nationally recognised expert, this group met monthly over two years to highlight ongoing challenges and develop outputs for use within the regions, as well as support public engagement and local data access discussions.
Key outcomes from the IG working group:
Unified information sharing guidance and safeguards across all CHC partners.
Templates for data sharing agreements for use of data in research which can be completed and accessed via an online Information Sharing Gateway.
Privacy impact assessments completed for all CHC projects.
Co-production of glossary of terms to create unified language across stakeholders.
Development of consent models for CHC projects requiring consent directly from citizen.
Preparing regions for GDPR regulations with new Data Protection Act of 2018.
Development and delivery of IG best practice training for workforce development with two sessions with fifty attendees.
A comprehensive guide of IG learnings, based on the CHC guidance and safeguards, is now publicly available. This will provide information on the issues surrounding data sharing between organisations, such as how to identify the minimum, legal dataset to meet the objectives for a research study, how to assess the lawful basis for processing or using data, the types of approvals and documentation that are needed as well as advice on accessing national datasets. By having this information at the start of the design of a project it should be possible to minimise delays and create appropriate pipelines for data flows from multiple stakeholders.