Darra Singh, the ex Chief Executive of Job Centre Plus, Chair of the 2011 Riots Enquiry and Local Public Services Director at Ernst & Young said last week at our Winter Conference “whole place community budgeting is being taken very seriously by Government – after all what other options are there?”.

I’ve blogged before on community budgets so won’t repeat that, instead I’ll focus on a key enabler – personal information sharing between agencies.

Why is this such a big issue? Here are two examples that illustrate the issue:

Example 1: Targeted alcohol support work

In the past 12 months a number of councils have requested from NHS trusts the names and addresses of people admitted to A&E with alcohol related admissions. Typically the basis for the request is not explained and the response is a refusal on the basis that it is not clear what the legal basis of the request is and because is no legal gateway allowing sharing without consent, the consent of the individuals involved would be required.

As consent has not already been gathered, it would be costly to seek it. In addition the benefits for doing so to the NHS are not clear. The issues here are numerous – the lack of surrounding narrative, lack of shared information governance process, predisposition towards not sharing, legal gateway or lack of consent and lack of resource or funding agreement to action it. This information may also not be held in a format readily sharable.

Example 2: Enabling early years support work

Over the past 3 three years, a number of efforts have been made to improve information sharing between maternity units and children’s centres in the North West. In brief, the aim has been to enable more targeted support of vulnerable families by children’s centre staff by sharing due dates of expecting mothers.

Even with iNetwork, the Improving Information Sharing and Management initiative, the regional chair of the Association of Directors of Childrens’ Services, council leadership and NHS staff at the Strategic Health Authority working with Directors of Nursing, providing clear legal protocols, consent processes and explanatory materials for mothers, it has taken an enormous effort and several trusts will still not share this information despite the overwhelming evidence of benefits.

What’s so problematic about information sharing?

Improving information sharing between organisations has to be considered in a different context to other underlying inhibitors of effective working, such as the lack of strategic and operational fit between health and social care services.

Essentially two types of information sharing exist: personal and anonymous. Personal data sharing i.e. information about named individuals, is the most contentious.

Issues that are predicated on cultural differences, lack of focus on outcomes, siloed service orientated performance measurement, and inflexible technology or process models do not have such a strong legislative and emotive grounding as those relating to personal information sharing.

This is because sharing of personal information is subject to the Data Protection Act (1998) which, if breached, can result in legally binding undertakings for organisations and / or a fine up to £500,000 for each breach.  For those involved in such a breach the impact could be described as “career limiting”. Alongside this language such as “Caldicott Guardian, Data Protection Officer, Senior Information Risk Owner” has helped embed a presumption that any sharing is to be avoided.

In addition to the legislative hurdles are a number of small but highly vocal lobbying groups which persistently challenge the sector’s efforts to re-use personal data for operational efficiency, fearing big brother implications. Complicating matters the media both nationally and locally often inflames information sharing concerns by being alarmist.

The issue of consent

Whether or not you can share and whether you need consent is at the heart of the matter. The eight principles stated in the Data Protection Act (1998) need to be observed in order to legally share personal information including between health and social care services.

Of the eight principles, organisations struggle most to identify the legal basis for sharing and whether or not consent of the individual is required for sharing. Unfortunately as each local authority is a separate legal entity each has to decide individually how to interpret the law and this is contributing to a patchwork of different capabilities.

Where there is not a clear power to share without consent, consent should always be gathered however this is not always practical, particularly in a multi-agency, multi-individual situation, such as those being looked at in the Whole Place pilot programme. The cost of managing consent and managing information access by different people across different organisations creates enormously complexity and therefore impacts cost, feasibility and likelihood of errors.

The result?

The result is that whilst information sharing does work well between health and social care in some localities, there is a wide spectrum of practice ranging that includes flat refusal to share any information regardless of legal compliance. Unfortunately there are also situations where information sharing is occurring without due recognition of the law, often based on a good personal relationship between two individuals. This risk similarly needs to be addressed and a balance needs to be found between sharing and protecting.

The general consensus amongst information management and governance professionals within iNetwork’s multi-region Effective Information Sharing and Security community is that this balance errs too strongly on the side of protection to the detriment of cost and quality of service. Indeed, sharing of information can save lives – as colleagues from the Fire and Rescue Services have talked about at some of our events.

So what do we do?

There is quite a lot of help at hand and the biggest advice I can give is for any change initiative with an information sharing component to engage the information governance people REALLY early on, before the work is scoped ideally.

There are some great initiatives like the national Improving Information Sharing and Management initiative that has been working on addressing a number of specific issues relating to Troubled Families and Ending Gangs & Youth Violence and has just developed a useful set of tools (http://informationsharing.co.uk) which will help organisations improve their information sharing.

The Information Commissioners Office is a great source of help. Although they seem to be shifting more towards policing, they have provided invaluable assistance to iNetwork members and it is wonderful to work alongside them so closely.

For initiatives like Greater Manchester’s Whole Place programme to address this issue going forwards I personally think a wholesale rethink is needed to address biases towards undue protectiveness, to embed better ways of working and to establish effective legal gateways for sharing without consent. Dame Fiona Caldicott is currently reviewing health and social care information governance. This is a tremendous opportunity to influence the information sharing landscape and it is important that chief officers look ahead to how they are going to overcome this operational challenge and engage with her and the review process.

In these complex programmes I would like to see more specific strategic workstreams charged with addressing information governance and change management challenges with links to key partners regionally, the ICO and with chief officers. This should be linked with improved capabilities within individual organisations.

Unfortunately my personal view is that the Local Government Association is weak in this area and could be doing so much more to provide strategic coherence. This creates a significant gap and one that needs filling badly, perhaps through a sub-group of the Local Government Delivery Council which does so much good already.

Much can however be achieved by changing the nature of interaction between health and social care colleagues – creating space for development of a shared narrative that improves each other’s perspectives. Bringing peer exemplars into the mix moves thinking from being ‘bleeding edge’ to ‘standard practice’ and much lower risk. iNetwork is busy in this space and will continue to be and looking ahead we are going to be engaging more senior officers on this. Please get in touch with me if this is of interest to you.

Finally – standards. Standards are still quite a problem – such as whether to consistently use the NHS Number as the common unique identifier of individuals. The Local eGovernment Standards Body (LeGSB) passionately advocates for this but for something so important its resources as severely limited and in my view should have LGA funding. In the NHS information standards are a core part of the 10 year strategy. The Government’s ICT strategy is predicated on information standards but it does not include local government – which is needs to. From a council perspective, SocITM’s “Planting the Flag” is a great document but there’s much to do and not a lot of time to do it in.

These are discussions we’re having in our Effective Information Sharing and Security network – if you’re not involved please join in and help address this issue through collective action.

In the meantime enjoy this superb video from our friends at Twist and Shout. Genius!