Tackling ‘Hot Topics’ around Information Governance

NHS England’s Head of Digital Primary Care discusses emerging issues around Information Governance within the Prime Minister’s Challenge Fund programme:

The effective use of patient data is of critical importance to improving healthcare delivery, service redesign and medical research in the NHS. However, it is critical that we clearly define robust governance processes to give patients confidence that their data is being respected in the times of digital innovation – The Guardian.

Earlier this month, a panel of Information Governance (IG) experts from the Prime Minister’s Challenge Fund (PMCF) attended a National Networking Event.

The event was held in London and aimed to highlight and address any existing and emerging issues around IG within the PMCF programme.

What I wanted from this event was to ensure that any and all Information Governance issues arising for PMCF schemes, while implementing their programmes of work, were being addressed. The immediate outcome of the event being PMCF schemes developing Digital Primary Care solutions with no unexpected IG blockers.

Our IG experts hosted a ‘hot topics’ table and invited PMCF schemes in attendance to discuss IG challenges being faced while implementing their projects.

Between our panel and the schemes, some key challenges were highlighted and discussed. Here, I discuss three that emerged and the ways in which we can address them:

Challenge 1: Schemes highlighted that they were receiving mixed messages from different organisations on what should be included in an Information Sharing Agreement (ISA).

Response: The minimum requirements to include in an ISA are the legal basis of the parties sharing the information and specify what information is going to be shared. We have recently posted a draft copy of a one-pager ISA produced for GPs, Practice Managers and alike, as well as an update about information sharing on the collaborative tool – digital_technology@knowledgehub, and NHS Networks (login required). If you do not have access to these tools, please email, and make sure to include the subject title: ISA one-pager for a copy. Information sharing agreement should be unambiguous and concise; the legal and technical details of arrangements should be reserved for contracts, policies and procedures. The Information Governance Alliance has produced some draft ISAs that can be personalised and used.

Challenge 2: Schemes said that issues were arising around data sharing agreements. They stated that some practices within their projects were not signing up to their data sharing agreement. However, due to patients willing to consent, schemes are allowing patient consent to override this as this is in the best interest of the patient.

Response: Remember patients have a legal right to choice of treatment and care under the NHS constitution and NHS Choice Framework – as we develop Digital Primary Care we mustn’t forget why we’re doing what we’re doing.

Challenge 3: It emerged that some schemes were worried about complex data sharing. For example, a patient consents for their information going out to an extended hours Hub. The patient’s updated information, with extended hours GP comments, then returns to the GP practice. However, there is a concern that other health professionals, such as physiotherapists, can view this information.

Response: From the outset, be clear with your patients what you intend to do with their information and who will view it. You can do this verbally, but you’ll need to back it up with your fair processing material. Health professionals should only access patient information on a ‘need to know basis.’ If you are concerned, then we recommend that you record this in your risk register and include any mitigating action you intend to apply. (That is, informing patients what will happen to their information and maybe using the audit trail facility to check unauthorised access by other health professions).

I’d like to thank everyone that contributed to the discussion at the event – together, the Digital Primary Care Team and PMCF schemes are working to develop Digital Primary Care quickly and within the legal framework set out by IG best practice.

Tracey Grainger

Tracey Grainger is Head of Digital Primary Care Development at NHS England with responsibility for supporting transformation across general practice and child health information services. This includes supporting services with a choice of high quality clinical IT systems, tailored to local requirements, while enabling the flexibility and innovation to meet current and future service needs of our patients and citizens.

She has over 24 years’ experience within the NHS that has involved leading service management, performance improvement and large scale transformational change programmes both enabled through technology and organisational development. Tracey has worked across national, regional and local levels in a variety of health care settings.

She is currently supporting the digital programme within the Estates and Technology Fund to support the delivery of new and enhanced technology solutions that will significantly improve patients’ access to services through innovative care models, making them available through digital enablement to all users of health and care data to support the delivery of better, safer care.