Information sharing

Patients’ notes have long been passed around on paper, or in a worse case scenario, not at all. But across the country there have been communities taking steps to go digital so all healthcare professionals can access and input patient data

With increasing pressure on already stretched services to provide quality health and social care to an ageing population, local places are developing new delivery models to fulfil demand. Partnership working is at the heart of this and, as such, information sharing plays a vital role in ensuring these new services create better outcomes for local people. This is why the Centre of Excellence for Information Sharing is working with a range of local places around England to understand the information sharing challenges and support them in finding solutions.
One way in which local places are seeking to provide seamless health and social care is by establishing a single information point and an integrated digital care record (IDCR), which brings together existing patient information held by a range of health and social care providers and can be accessed by professionals supporting a patient. But surely, this solution is just as simple as creating a database that everybody can tap into? Sadly not, people play an integral role in bringing this solution to life and the Centre has been looking at how local places have identified and challenged cultural barriers to implement this vital resource. Here we look at the Centre’s findings and see what we can learn from them.

Effective leadership
Leadership has been identified as a key enabler in implementing a single care record, particularly the role of senior managers in enabling the transformation or cultural change within an organisation. The need for a strong, focused leader is particularly poignant when trying to make a change, which will impact on not just one, but a whole host of organisations within a partnership. This was highlighted in a local area when the NHS trust took charge of the IDCR project .
Across the local areas that the Centre worked with, many identified that strategic leaders were a key enabler in driving forward cultural changes, through promoting and supporting integrated visions and encouraging buy-in and support from partners.
As with all areas of change, a strong, recognised, trusted voice to rally the troops and push the work forward is essential.
The Centre, through its work, identified a number of key characteristics displayed by leaders when implementing an IDCR across organisations. They all shared a number of critical qualities; an appetite for risk, the ability to ask and answer difficult questions, have a deep understanding of the environment they work in and have the drive to move the work forward. Finally, and possibly most importantly they need the credibility among their local peers so their voice is trusted and carries the necessary weight to push the project forward to encourage the required buy-in and support.
One of the local places the Centre has worked with is Bradford and Airedale, who are a great example of how an improved level of leadership can be used as an enabler for information sharing (see Case study 1).

Case study 1: Bradford and Airedale
Health and social care providers across Bradford and Airedale envisaged a health and care economy that would bring together primary care, secondary care, mental health and social care partners. The joint vision was to create an integrated digital care record (IDCR) with other local areas as a critical enabler for the partners’ integrated care for adults programme (ICAP).
The partnership was made up of primary and secondary care trusts, mental health and social care partners as well as GPs and clinical commissioning groups (CCGs). The first step was to establish a robust policy of partnership working, agree principles to enable inter-agency agreements for the transfer of information and a governance group to coordinate the programme of work.
From initial meetings it was abundantly clear that there were differing opinions about how the projects should be progressed, which would have caused tension and created problems if this wasn’t properly managed from the offset. So the local NHS trust was put in place to lead the work as it had previous experience of working with the other partners, a clear view of what the IDCR wanted to achieve and were a trusted voice among the group. This put them in an ideal situation to progress the work – this was the start of a change in culture across the group towards breaking down the barriers to information sharing.

Building relationships
Closely related to strong leadership, the need to create and maintain strong, reciprocal relationships was another enabler that was highlighted as a way of making cultural change in terms of information sharing. Creating and nurturing key relationships based on shared values and outcomes helps to build a partnership and creates a shared bond to achieve current and future goals and sets up a line of communication to discuss future issues or areas of work.
One process that helped to progress and cement relationships in the local places the Centre worked with was the collaborative work needed between organisations in a partnership to work through and agree on fundamental changes, such as developing an information sharing agreement (ISA) or agreeing on the scope and purpose of an IDCR.
These joint journeys created a greater understanding between partners to be clear about what information each holds and how they would benefit from having access to others data which creates debate, encourages joint decision making and helps build strong relationships.
Through its work in local places the Centre worked with Bristol, North Somerset and Gloucestershire (BNSSG), which highlighted a great example of how improving relationships can be an enabler for information sharing (see Case study 2).

Case study 2: Bristol, North Somerset and South Gloucestershire (BNSSG)
BNSSG wanted to create an integrated digital care record (IDCR) to improve the level of service for patients and address the lack of access to shared, accurate information which was seen as a blocker to the provision of high quality, person-centred care.
The project brought together 17 partners spanning a range of different organisations, including local authorities, CCGs, hospital trusts, GP practices, community health services, mental health partnerships, ambulance service, and a regional academic health science network. This was the first time all of these organisations had pooled together, which gives an indication of the importance of the projects for health and social care improvements in the area. Working in such a large partnership was a change to the normal way of working and showed the beginnings of a change in culture towards partnership working and information sharing.
A number of the partners had previously worked together, but this was the first time all 17 had pooled together as a single entity. To initiate the cultural change to relationship working, the partnership came together to debate on the single software solution that should be used. The session provided some healthy discussion and difference of opinion, but also highlighted the range of data that each organisation held and how having access to it could benefit others. This greater understanding enabled a strong relationship to blossom and cemented each organisations commitment to the project and the sharing of information.
Consequently it was decided to create a new bespoke system that integrated existing software. This was felt to be the best option for the region given the disparate systems and range of organisations involved. It also reflected the desire locally for the work to be driven by a partnership of equals, with no one organisation owning the pooled data, or imposing its ‘own’ system on the others in order to be able to share information. This strengthened the importance of creating relationships between the partners, which was another example of the cultural changes taking place.

Communication
Excellent communication was another area that was highlighted as a key enabler to removing barriers for information sharing – within areas that didn’t see this as a priority, partners reported feeling isolated and in the dark, which in turn created distrust and affected working relationships.
Successful communication with the main set of external stakeholder and patients was seen as just as important as the internal communication priorities. The issue of sharing sensitive information, such as healthcare records can prompt concerns about the control patients/carers have over the sharing of their own information. This might include how securely the information will be treated, who will have access to it and how it might be interpreted or used.
In order to address these concerns and empower people to make informed decisions about consent, the need for strong communication channels is imperative.
After all, if patients don’t opt-in to share their information, the IDCR is essentially an empty database and so no use to anybody.
The benefits of improving communication to support information sharing were shown during the Centre’s work with Southend (see Case Study 3).

Case study 3: Southend
In Southend the proposal was to develop a local information sharing scheme that enabled sharing of data between health and social care for a range of primary and secondary uses, between GPs and social care. This relied heavily on patients opting to allow their confidential information being shared – so a planned communication campaign was needed to help inform local people and support decision-making across the community. The was developed jointly by Southend CCG and Southend Council.
A key focus was ensuring that there was sufficient awareness about the proposal to share data between GPs and social care for both primary and secondary uses of data. It was also important that people were aware of the options and processes available to opt in to the scheme. A joint communications plan was drawn up and included the use of public meetings, patient and voluntary group forums, local media and council publications. To help gain public support, Southend worked closely with the clinical lead for the project, lending all communications the ‘public face’ of a trusted doctor.
A single point of contact was used for people to provide feedback and their concerns about the scheme, which made it easier to monitor issues and respond to them in an appropriate and timely manner. The prompt management of responses resulted in a number of local people publically changing their view on the data sharing arrangement from opposition to support. Southend’s communication with local people has continued beyond the ‘go live’ date of the scheme, and it remains a standing agenda item for patient participation group meetings.
Making communications a key part of the project helped to create a shift in culture, encouraging debate and engagement to tackle concerns, and give people the confidence and encouragement required for them to ‘buy-in’ to making information sharing happen.

The future of information sharing
There are lots of opportunities to improve the way that information is shared between organisations, which make up a partnership. These will invariably vary from place to place but are always intrinsically linked with the information sharing challenge, which is being tackled.
The future of information sharing is difficult to pinpoint, but with the inherent benefits, no doubt it still has a big part to play in health and social care.

Imogen Fuller, engagement manager, Centre of Excellence for Information Sharing.