DHACA Day III Output (IG)

Attendees:

  • Carol McCall
  • Nadia Kovaleuskaya
  • Nazeeha Hasan
  • Alan How
  • Phil Stradling

Main notes from discussion:

During the SIG session we chalked up the main actors that need to use and share information, and with input from the team we identified a range of issues and topics from different perspectives.

For instance, in addition to actors such as GPs, hospital and individuals we also need to consider professional bodies such as BPS and RCPCH who become involved in endorsing particular approaches to the sharing of data, and companies such as Merck who bring a new medical devices to market that comply with MDD.

Carol McCall mentioned the work by the British Pharmaceutical Society in publishing the work of an expert group on data sharing, and the Royal College of Child Health has recently published a standard that requires data sharing between providers and PHRs.

An interesting point raised by Alan How of Merck is when a device for administering a medicine that complies with MDD and with the data protection act bumps into IG obstacles at a local level. Merck has gone to effort of both drug approval and device certification, but this is still not sufficient for local clinicians who get stuck in the IG issues raised by such a device being used by individuals. This suggests an action for DHACA to provide clarity and guidance.

Genomics is emerging as a new source of data that can be used by individuals and professionals, such as for personalisation of care. The IG issues raised by the use of genomics data is a new area to explore.

Other points:

New services are being designed for the management of major LTCs such as COPD and diabetes which will need approval by CCGs and IG boards. These new services and actors such as CCGs and IG boards will want to know that any data sharing arrangement with the PHRs and apps used by individuals and carers are consistent with established guidance.

Questions were raised about benchmarking, inspection and gate keeping of data sharing arrangements. These topics could be addressed as part of app certification.

A number of enabling capabilities for data sharing were raised such as open APIs and linking of identities used across different domains, such as linking GP and PHR accounts and what permissions are associated with each linking of accounts.

There are many initiatives across the NHS for sharing data between professional and providers. These include new systems such as HIEs that involve the collection of metadata for what data about an individual is held and by whom and the whereabouts of the data location.

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