For the new care model vanguards and the integrated care pioneers, who are redesigning care on an industrial scale, information Governance (IG) has the potential to be a major headache. In this blog, Geraint Lewis, Chief Data Officer at NHS England, discusses the launch of a new collaborative network aimed at ensuring that IG becomes a tool to improve health and wellbeing rather than being perceived as an irritation or a barrier to good work. 

Information governance. Seven syllables that can instantly strike a sense of dismay, despair or despondency into the heart of anyone who wants to improve how their NHS service is organised and delivered.

Like many people, I have mixed feelings about IG. On the one hand, it clearly has a vital role to play in ensuring that NHS services obey the law of the land and in reassuring patients that the NHS will look after their confidential information carefully, fairly, and securely. On the other hand, however, there is a widespread view that IG in England has become too Byzantine in its complexity and that in practice, it is too risk averse and too inflexible to meet the modern needs of patients and clinicians.

This network will be different.

The IG professionals working with me to launch this new network are, to a person, determined to change the face of IG for the better. Our collective aim is to be open, straightforward and helpful. We want to ensure that the vanguards and pioneers feel empowered to take a sensible and proportionate approach to privacy and confidentiality. We’ll do this firstly by challenging some of the myths associated with IG but also by holding national bodies to account where their guidance is outdated or unwieldy, or where we hear that they are not being responsive enough to the new requirements of the service.

Backed by the Information Governance Alliance, the IG network will support the vanguards and pioneers by promoting the use of national tools, such as privacy impact assessments, and by refining and promoting local materials, so that sites do not duplicate work that has already been done by their peers elsewhere. We will listen carefully to the vanguards and pioneers to identify where there are problems that we need to resolve and to see where more support and advice is needed.

Like its sister network for population health analytics, which we launched a few weeks ago, this will be a supportive and collaborative network. Rather than issuing yet more reams of guidance, we will focus instead on co-developing frameworks, checklists, flowcharts and templates. Our guiding principle will be to simplify processes and to provide a consistent approach to IG.

The new network is being hosted on an online platform called the futureNHS collaboration. It includes chat areas for the vanguards and pioneers, which will be complemented by a rolling programme of Webex presentations, Q&A sessions and face-to-face meetings. In order to help members of the network navigate their way around the platform, we have organised it according to the structure developed last year by colleagues at the Local Government Association. They found that pioneers were using data and information for six purposes (see below). The platform will therefore include individual pages for all six purposes, each of which will include materials and links to relevant resources, plus a dedicated chat area.

1. Sharing information electronically (integrated digital care records)
2. Care coordination, planning and delivery (supporting the coordination of care across providers)
3. Risk stratification for case finding (identifying those at risk of an adverse event)
4. Tracking outcomes across a pathway of care (tracking particular cohort groups, irrespective of care setting)
5. Developing alternative payment models (including capitated budgets)
6. Understanding current and future population needs (strategic and commissioning needs analyses)

Ultimately, the purpose of this network is to empower the IG representatives of each vanguard and pioneer to achieve the aims of the NHS Five Year Forward View. But while the primary aim is to support these people, if you are working on a similar initiative, such as a primary care home or test bed, or if you are otherwise keen to help, we would really welcome your input. Please contact england.ignetwork@nhs.net for details about how you can get involved.