On Thursday 8th June, Health Foundry partnered with the Local Care Networks (LCN) in Southwark and Lambeth to host an event looking at the opportunities and challenges with data sharing in the local area. We had a packed room of over 50 representatives from the local healthcare system sharing what they were working on and looking for ways to make data sharing a reality.
Health Foundry and the LCN Development group plan to host a series of follow on conversations and experiments in the area of data sharing. If you are interested in getting involved, please contact Sinead Mac Manus.
The event kicked off with Amanda Williams, Assistant Director for Lambeth LCN Development setting the scene for us. Amanda explained why the Local Care Networks were set up, essentially to help providers work collaboratively to develop new models of community-based care to improve local peoples’ health and wellbeing, their experience of the healthcare system and reduce reliance on secondary and primary care services. The focus of LCN’s are to improve care coordination of people with three or more long term conditions eg COPD, cardiovascular disease, diabetes.
Our first speaker of the afternoon was Murat Soncul, Head of Information Governance at South London and Maudsley NHS Foundation Trust (SLaM). SLaM specialises in mental health and comprises three acute sites, over 100 community sites and 300 clinical teams and have adopted an electronic health record for their patient data. They started a consortium in February to look at any concerns or issues around Information Governance (IG) and data sharing for these health records.
The primary purpose of a health record is to facilitate communication between healthcare professionals and patients and it can be a useful tool in providing a good standard of care. But Murat asked as care professionals do we have a right to access patient data? He asked us to see Information Governance not as an obstacle but as an enabler and called for a need to find a common language that all healthcare professionals (HCPs) and patients can understand.
Some issues that need to be considered are:
- The need to state clearly what the information and data will be used for and have a plan for using it.
- The need to map out what is going on around data sharing and IG and identify good practice so we don’t duplicate effort.
- How to find a common model between all the organisations (and also find the resource to pay for coordination)?
- How do we make it easier for HCPs to report back and input into the system?
Murat was followed by an update on the Local Care Record by Jack Barker, CIO at King’s College Hospital (KCH). Jack explained that the Local Care Record came about a few years ago as a small group of clinicians had a real issue with sharing information across the three acute sites in South London. Data from 2013 shows that 47% of patients seen at SLaM also had a record at GStT and 43% also had a record at KCH. For those patients, the flow of information did not match their movement between sites, care pathways were disjointed and important information was potentially unavailable. They set up KHP Online - a system for sharing patient information across organisational boundaries in South East London that has now developed into the Local Care Record (LCR). The LCR now interacts with primary care records allowing clinicians in both secondary and primary care to access each other’s patient records..
The LCR is a view only platform. It does not store data or do analytics. Information is shared on the basis that it is legal and implied consent as long as patients have been informed. The LCR is accessed about 2,500 times a day. Jack shared the main questions that citizens have about the LCR are:
- Who can access it?
- What can they access?
- What control can the patient have over access?
- How can they be assured it is not being accessed inappropriately?
There are big plans coming next for the LCR including social care integration in Lambeth and Southwark, linking up with Lewisham, Greenwich and Bexley to extend the geographical scope of the record, and link to Community Care in Bromley, Lambeth and Southwark.
Next on the agenda, we had Dr Emma Rowley-Conway, a GP in Lambeth and Clinical Lead for Digital Development Lambeth CCG giving an update on The Digital Programme from Our Healthier South East London (OHSEL) - the NHS Sustainability and Transformation Plan (STP) for South East London.
Emma shared OHSEL’s vision for health and social care in South East London which included supporting people to be in control of their health and have a greater say in their own care, making sure primary care services are excellent and have an increased focus on prevention, reduced variation in outcomes, and improve joined up care so that people receive the support they need when they need it.
Digital technology will be a big driver in this change and OHSEL’s plan is to use technology to enable the transformation of the delivery of care, ensuring that all HCPs and citizens of South East London are digitally connected and able to access information and services at any time and from anywhere. An ambitious vision for South East London has been set out in their Local Digital Roadmap (LDR), which examines the opportunities for the NHS to exploit new technology over the next five years and beyond.
Emma shared an example of one specific local challenge as an example - electronic referrals from primary to secondary care which illustrated the link between national NHS priorities and universal capabilities and the scene locally. (See table below.)
Next up was Dr Felix Jackson from medCrowd who are one of Health Foundry’s members. medCrowd are working with Lambeth CCG to enable GPs to access specialist advice from Evelina London Children’s Hospital using the platform. They are integrating medCrowd with EMIS Web so that the GPs can start a conversation with the paediatric team while looking at the patient’s electronic record and the paediatricians will be able to give advice from their mobile phones. Felix explained that medCrowd is compliant for confidential patient information meeting the standards required by NHS IG Toolkit, ISO27001 (with certification in progress) and HIPAA in the US.
Following Felix was Dr Nicola Byrne, Deputy Medical Director and CCIO at SLaM sharing the vision for SLaM as a Global Digital Exemplar and particularly the story of developing Healthlocker - a personal health record for mental health.
Healthlocker is a secure platform that promotes supported self-management and opportunities to improve communication between service users, carers and clinicians. It allows service users to self-manage their condition, allows clinicians and healthcare professionals access and contribute to records, and ultimately, facilitates better communication between patients, carers and clinicians. The system also allows for enhanced data collection and will enable a longitudinal view of patient data allowing a clinician to track a service user’s progress over a number of years.
Nicola explained that Healthlocker has been developed in a much more agile and user-centered way than its predecessor Myhealthlocker. The platform is open source and SLaM are implementing a framework which will enable all mental health trusts to contribute towards its evolution. The platform will also be free for any NHS entity. SLaM are launching Healthlocker this July with a Minimum Viable Product to get users to test it and give feedback. The platform is available now to view and demo accounts are also available for professionals to have a play.
Next up was Mark Kewley, Director of Transformation and Performance at NHS Southwark CCG who shared some work that the Southwark and Lambeth Strategic Partnership are doing around data sharing. The Southwark and Lambeth Strategic Partnership are a collective of the local CCG’s, Local Authorities, Trusts and the GP Federations. Their vision is to increase the value of care for the people of Lambeth and Southwark and Mark reminded the audience that they cannot achieve this without finding new ways of sharing information.
Sharing information has two main benefits. Firstly, the better provision of direct care to individuals eg using data to compare people against the population to inform proactive tailored care. Secondly, the development of system-wide intelligence for service planning (using whole population data to inform planning), service evaluation (using data to benchmark against others) and health system research (using anonymous data to better understand patterns of disease and treatments).
Debates about data sharing often focus on patient’s concerns about their data being shared outside the use for direct care. However, their scoping work found that many patients can see the benefits in both. For example, a patient noted:
“I didn’t realise that I needed extra help, but because my care team got in touch with me – before anything got seriously wrong – I’ve been able to get more support to be well and to stay well. Little things like going to self-management support so that I feel more confident about looking after myself, and knowing I’ve got some goals to work towards.”
Another patient commented:
“I know that de-identified information about my care journey, and everyone else’s care journeys, helps care professionals and public health to see if new services and treatments actually help to improve outcomes. As a patient, this is a way of me giving something back, so that my experiences help improve care for everyone else. And as a citizen, I know that I’m helping the NHS to spend money on the things that work, and to stop doing things that don’t.”
Clinicians also found the use of data sharing useful:
“I can compare an individual patient against populations with similar characteristics to inform my advice the available treatment options, in support of better shared decision-making. For example, with a candidate for orthopaedic surgery, our conversation will be informed by what PROM scores are for similar people at 12, 24 and 36 months post-intervention.”
Mark shared examples of good practice such as the North of England (Connected Health Cities), Nottinghamshire, North West London (WSIC) and North East London (Discovery Project) who are building data stores for linked data to support direct care and secondary uses. This means that a lot of the IG and technical issues have been and are being overcome in other places in the UK. He also showcased some of the existing examples of great technology platforms and builds that have done some of this work already in Lambeth and Southwark including Lambeth DataNet, the Local Care Record and Healthlocker.
The final case study in data sharing and care coordination came from Stephan Zentgraf, Senior Account Executive at Lumeon. Lumeon allows healthcare providers to build and automate measurable, predictable and controlled care pathways, using their Care Pathway Manager software and they are one of the companies on the current cohort of the Digital Health London Accelerator.
Stephan explained that when they start working with a health organisation they don’t start with the technology but start with what the client wants to share. Their solution uses linked data to find and coordinate care for patients and can also provide business intelligence which is essential if we are going to target the right care to the right patients. He gave an example of an orthopaedic surgeon using their software who when checking in with patients 36 months after surgery found very different outcomes. Sharing data should enable shared decision making between patients and clinicians allowing patients to find out what works for people like me rather than a standard care pathway.
The first session finished with an introduction to Health Foundry by Sinead Mac Manus, Start-up Manager and detailed some of the services that we can offer to the local healthcare system.
After a much deserved tea and coffee break, we broke into groups to examine what are the opportunities and challenges of data sharing and collectively to decide on next steps.
Some of the opportunities identified by the groups were:
- The patient being the ‘data controller’ and having a ability to view or access their data in the way they want eg as a PDF report or on a mobile app.
- The ‘system’ finding a way of indemnifying GPs against any data protection issues which would enable them to take more risks around data sharing.
- The ability to to take a longitudinal view of care and therefore provide more personalised care.
- Correlating people’s healthcare experience with ‘real-life’ experiences such as banking, travel and taxis.
- Using incentives to drive best practice and behaviours.
- Identify routes into care to guide both patients and staff.
- Potential to integrate with other sectors eg voluntary sector.
- Simple digital consent management tick boxes for patients eg secondary care, research etc.
- Coordinate My Care as a starting block to build on.
- Start with small project to test working together eg unified care planning tool.
Some of the challenges highlighted included:
- Access to information and data for more than HCPs (issue of access to the NHS N3 network)
- GPs being small organisations who are understandably risk averse but this is collectively self-defeating.
- Digital literacy of both HCPs and patients could be an issue.
- Replacements costs are so high we end up building onto existing out-of-date systems.
- The General Data Protection Regulation (GDPR) coming in May next year which has implications for data sharing.
- More data about patients makes it easier to identify them.
- Need to change the whole pathway and processes which is hard to do.
The afternoon finished with a Q&A panel focusing on next steps. It was agreed as a group that all the stakeholders should focus their efforts and focus on one area that data sharing could help with (eg care planning) and make something small work. It was suggested that an existing platform like Coordinate My Care could be adapted.
Another area for early intervention was the issue of how do we get GPs on board with data sharing as they are personally liable as the data controller and there is no indemnity available in the current system. It was agreed that any data sharing agreement must have a clause saying that GPs are indemnified. Mark Kewley suggested that similar to other STP areas in the country, to overcome this issue an independent legal organisation is set up that owns the infrastructure to get around power dynamics with a wide representative governance. Emma re-emphasised the need to do care planning now and not wait for an organisation to be set up and suggested that pilots are the way to go to get some quick wins from some early adopters and lessen the risk.
The last point raised was not about reinventing the wheel. Lambeth have already invested in award winning tech architecture eg Lambeth DataNet. If we had a different data sharing agreement, all of the parties could start to coordinate better tomorrow.
Health Foundry and the Lambeth LCN Development group will be hosting a series of follow on conversations and experiments in the area of data sharing. If you are interested in getting involved, please contact Sinead Mac Manus.