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Case study: Better data sharing through regional information governance framework

Overview summary

A data sharing framework has been agreed with all NHS trusts in the Oxford AHSN region to establish a consistent approach to information-sharing. Since the establishment of this framework the average time taken to agree Information Governance arrangements for projects has dropped from 4-6 months to 4-6 weeks. This brings benefits in relation to patient safety and service development.

Challenge identified

Previously, to access data from multiple providers involved completing separate data sharing agreements for each organisation. This was a lengthy and often confusing process to engage the right individuals, repeatedly provide background information and ensure consistency in the information and detail required. Not only did it cause managers frustration, it also introduced risks through delays in signing off agreements before data could be shared.

Actions taken

To address this the Oxford AHSN Informatics team developed a single approach to sharing information across the Oxford AHSN partner NHS trusts. The process involved extensive collaboration and consultation with Information Governance colleagues across 12 organisations to develop an Information Governance (IG) Framework and inform the structure and content of the documents.

There was recognition of the effective cross-organisational work of the Oxford AHSN and the need to share data securely across organisational boundaries to support projects.

Three documents were created: guidance, agreement and protocol. These make up the Oxford AHSN’s IG Framework. This enables a clear IG direction for projects across the region. Sign up to the Data Sharing Agreement started in 2015/16 and continued following further engagement in 2016/17. Examples include Acute Kidney Injury – the IG Framework enabled sign-off on a protocol document which proposed to replicate the collection, linkage and pseudonymisation of a patient datasets across all trusts involved. The data is currently being returned and analysed to support the AKI project group to understand outcomes and variation across the region. See case study below for more details.

All Oxford AHSN partner trusts are now signed up to the IG Framework. They are:

Oxford University Hospitals, Oxford Health, Royal Berkshire, Berkshire Healthcare, Frimley Health, Buckinghamshire Healthcare, Milton Keynes University Hospital, Great Western Hospitals, Bedford Hospital, Southern Health, South Central Ambulance Service, Central and North West London.

The new IG framework takes account of the Data Protection Act and national IG guidance and best practice. 

Impact/outcomes

A more consistent, clearer and quicker approach to data sharing has been established, setting a high standard of information governance across the Oxford AHSN region. Improvements achieved include:

  • consistent approach to sharing data, to make the process easier and quicker
  • Oxford AHSN project managers familiar with the guidance and single form to complete to share data
  • clear process of information required and the steps needed to get sign-off from all trusts included in a project
  • setting a high standard of information governance
  • providing a clear message for information governance teams about the process, the Oxford AHSN and its objectives. The process is agreed and clear, teams are familiar with the format.
Measure Outcome
Number of trusts signed up to the Data Sharing Agreement 12 (this represents all trusts involved to date)
Number of protocols signed off for specific projects 10

How long for IG to be arranged for a project – before

4-6 months
How long for IG to be arranged for a project – after 4-6 weeks
SPOTLIGHT: acute kidney injury – read more >

Supportive quotes

“The Oxford AHSN team has created an exemplar for information-sharing between partner organisations” – Dr Chris Bunch, Oxford University Hospitals Caldicott Guardian

AHSN priorities addressed

  • Care and Quality
  • Funding and Efficiency

Future plans

A steering group with membership drawn from all organisations signed up to the IG framework has been established to oversee its management and development.

Coverage of the framework will be extended beyond NHS trusts to include Clinical Commissioning Groups, GP federations and individual GP practices.

Work will develop with patients and GPs to develop a ‘consent for contact’ model to include patients in service evaluation and research projects.

Tips for adoption

  • Take time to engage IG colleagues, be clear about the aim and the value offer.
  • Provide notice of meetings – be realistic that diaries will be busy and you will also need a way to digitally engage professionals outside of workshops and meetings.
  • Clinical involvement and support – both in the development of such a framework and in every project that needs to share data, local clinical sponsors are key.
  • Provide time for consultation and an easy format to feedback ideas – recognising the nature of the documents under review.

Contact

Katie James, Clinical Engagement Lead   katie.james@oxfordahsn.org   Tel. 07880 473699

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