Digital, Data and Technology

“Let’s take a step back now that COVID’s not such a problem, hopefully going to stay that way. Maybe we need to take a step back and think, OK, we implemented digital systems in a hurry because there was a necessity. But now we’ve got time can we take a step back look at what we’ve done and actually re-implement them in a proper way, in a way that they work seamlessly and smoothly, and they save time and they make things better.”

“I feel quite lucky at the moment cause the one I’m with now they’ve got an online system which suits me well. So if I want to speak to a doctor or want to discuss any of my health needs I can just log on to the system put in it as a text based system and they’ll get back to me. And they’ll either offer me a telephone appointment or face to face appointment and that works really well. But it’s all very good for people who are online at home and connected but I’m very conscious that that isn’t the case for everybody. So, I’m not quite sure how it works for those who haven’t got those facilities.”

Enabler 1: All health and care professionals are easily able to access relevant and timely information at the point of care.

Digital technology can improve workforce productivity, enable services to be better integrated in local areas, and free practitioners to be able to give more time to care. Practitioners need easy access regardless of their location to information digitally held by organisations, so they can review and update the person’s record. This includes requiring fit for purpose IT and easy connectivity (for remote working), as well as all partners to work together to align standards.

The local health and care record will develop over the coming years, supported by the widespread use of national systems such as the Summary Care Record and other systems in use across Suffolk and North East Essex partners.

We will:

• Develop a digital workforce capacity and capability improvement strategy to support our workforce to develop the digital skills they need to make effective use of new tools and services, creating a secure and capable digitally literate workforce, alongside Information Governance guidance.
• Mitigate risks introduced by new capabilities, such as multi-agency clinical safety governance, enhanced system-wide cyber security, and an ethics commitment and approach.
• Encourage local innovation and integration alongside development of standards.
• Work towards an ICS-wide connected and secured wireless network, with appropriate operating model and common standards, and expansion of Robotic Process Automation, machine learning and augmented intelligence to free up time to care.

Enabler 2: All people in Suffolk and North East Essex are easily able to access key information about their care digitally.

As people have easier access to their own information, and information becomes more accessible to practitioners, new connections will be more straightforward, and we will see systemic progress towards integrated care.

We will:

• Enable people to have more choice in accessing services and self-care through digital access to their records, care plans, available appointments, medications management, and local services.
• Support the adoption of new applications and targeted online services to help people manage their health conditions.
• Adopt or develop and agree standards for care plan and health records connected to NHS App, providing strategic support to our Alliances and Primary care Networks in areas such as end of life, mental health and maternity.

Enabler 3: People involved in health and care can easily access useful information and services digitally.

This stage brings together key existing and some new capabilities to ensure tools and information are easily accessible and useful for practitioners.

We will:

• Work with people, practitioners and clinicians to improve and adapt digital capabilities within and between organisations in our system.
• Ensure that coordinated information on patient health records and care plans flows from patients to relevant practitioners, and that useful information follows the patient’s pathway. This will minimise wasteful activity and improve patient experience and care planning.
• Ensure that digital capability is easy, and useful, and improves workforce productivity.
• Make existing combined data sets appropriately available to support population health management planning in local areas, progressing towards information being accessible in near real-time.
• Adopt and adapt best practice and coordinate investment plans that support our alliances to deliver digital access to services, support for people to manage their own health, new and integrated models of primary and community mental health care, easier referrals processes based on best practice models, improved access to tools for integrated care, and health prevention.
• Introduce core standards to evolve a simple and sustainable operating model that recognises organisational autonomy, alongside the need for collective capability.

Enabler 4: People have better outcomes as a direct result of near-real time insight gathered from easy and useful access to information.

We will:

• Ensure technologies work for everyone, from the most digitally-literate to the most technology-averse, and reflect the needs of people trying to stay healthy as well as those with complex conditions.
• Develop interoperable information systems supported by telehealth to enable timely transfer of information between staff, more effective care pathways and improved access to and intensity of rehabilitation for people.
• Use population health management (PHM) solutions to identifying groups of people who are at risk of adverse health outcomes, predict the health and care interventions most likely to benefit individuals, and identify any gaps in pathways of care to ensure they are filled.
• Implement data security and monitoring systems across the whole ICS, educate staff, and design systems and services to be resilient and recoverable. We will also promote access for developers to innovate to create new solutions.
• We will move towards full integration with smart home and wearable devices.
• Use of de-identified data extracted from local records, in line with information governance safeguards, to enable more sophisticated population health management planning approaches and support world-leading research.

Digital records are not new in healthcare, but they are generally silo-ed to an organisation, and held on different systems in different ways. Often, only health and care professionals within the same organisation can see this information. This means it can be difficult for them to work together to deliver the best care. When information is made available in a more joined-up way, health and care professionals can provide faster, more effective care for you and your family.

Connecting these records is a challenging and long term programme. Our first step has been to adopt My Care Record, which is an approach to improving care by joining up health and care information, and aligns the processes, the policies and the approach to information sharing between organisations.

To enable stage 1 of the Shared Care Record across Suffolk & North East Essex, the Health Information Exchange HIE at West Suffolk Hospital (the HIE ‘hub’) has been connected with local GP practices, community teams, Hospices, Social Care teams, Urgent Care and local hospitals and mental health trusts. As each connection goes live, staff on the frontline can read relevant information about the person they are treating, that is held by another organisation. This increases safety, enables the most appropriate decision making, increases efficiency and reduces waiting times, as well as the need for the person to repeat their story as their care needs progress. Around 2m records are already connected, and the system is accessed around 40,000 times a month – this number is increasing rapidly. User feedback includes

• A patient presents with severely reduced renal function, no previously blood test available on our system. Quick review of HIE shows a documented “chronic kidney disease” problem via GP records and a recent blood result from CUH which shows a similar level of renal function indicating this is longstanding and not an acute kidney injury. HIE reduces the need for phone calls to GP surgeries or other sites to obtain this information and reduced chances of admission or onward referral for an acute kidney injury as allow the WSFT result to be put in context of others
• We admitted a patient with stage 4 ovarian cancer undergoing chemotherapy who was vague about her current treatment and prognosis. We were able to review a very recent scan to expedite her current management and not require a repeat CT scan. It made a big difference to her care and the time required by us to make management plans for her
• It has been HUGELY helpful and uber appreciated! Enables us to check quickly and accurately before speaking to outside people (without disclosing). Also saves us wasting the ward staff time! One of the best developments yet

Next steps of our Shared Care Records programme include:

• enabling patients access to their Personal Health Record
• enabling composite records and cross-organisational care planning
• enabling the data to be reused securely to better plan care delivery and enable population health management.

We will achieve this by building on and connecting the capabilities we have, and by adopting open standards, common processes and provide support for our workforce in adopting new ways of working

Click here for more information on My Care Record

NEE, Herts & West Essex and the Midlands Accords collaborated to develop a virtual desktop infrastructure that enabled out of hospital staff to be able to access secure systems safely, from a personal laptop, smartphone or tablet device. Faced with a national shortage of laptops in February, this was rapidly enabled in March to ensure that we had a scalable solution to a high number of staff needing to work remotely, securely and flexibly, as well as provide a rapid response to an individual, location specific or more widespread need. As the immediate pressure of the pandemic subsided, and the flow and deployment of laptops was well underway, we enabled the capability to a wide number of different types of staff, working for different organisations, operating in different ways, and using different systems, to understand where this capability enables different ways of working, and wider workforce transformation benefit. We were also able to provide rapid access to systems to staff who had to isolate, and there were insufficient available laptops to provide them with one. It is clear this capability has value for many different types of staff working in a range of ways.

The ICS Digital team commissioned Healthwatch Suffolk and Healthwatch Essex to understand what peoples experiences were, and what we could learn from that. The approaches were complementary, and enabled the following learning through phone calls and surveys

• 27% of patients/carers said that they or their relative lacked confidence with using digital technology and 21% said that they/their relative did not know how to use digital to access health or care services. Availability of technology was less of an issue.
• Responses to the open ended questions were mixed and reflected inconsistencies in how digital technology is being used across the system.
• Generally people felt moving towards digital services was felt as very positive.
• Some said that digital technology meant they had to rely on others to access services.
• Training was a concern and people were not sure where to access positive training.
• People were concerned about the safety of their data online
• Professionals were generally confident in their use of digital technology, and felt their digital consultations were effective. They were also satisfied with their access to digital technology and internet connectivity

Recommendations that came out of this was to communicate the latest offers as widely and frequently as possible, to ensure residents are aware of the digital offers and how to access them, including quick guides or details of where to access support.

We have just commissioned Phase 2 which will provide

• A briefing document of experiences – with a focus on digital exclusion and health inequalities.
• Co-produced guidance for services to implement digital changes.
• A group of interested patients and professionals who can be contacted to be involved in further co-production work.
• Wider communication with the public about access to digital services and our findings
• Sharing the challenges of a wider demographic in relation to digital literacy, digital poverty and digital exclusion
• Reporting the challenged and recommendations for digital inclusion along with a series of case studies on the impacts of digital exclusion/inclusion.

The brain child of Ciaron Hoye (Deputy CIO Birmingham & Solihull CCG) and Kate Walker (Suffolk & North East Essex ICS Digital Programme Director and Programme Lead East Accord), the Digital Ethics Charter was created as a set of common principles that digital professionals and those working with “data and technology for public use” can adhere to.

It has been just 13 short months in its journey – for professionals to be able to make a pledge where they would think and work within an ethical code of conduct; promoting the rights of the people and organisations they serve. Continuing to gain support, it now has widespread acknowledgement from digital professionals across England within the public sector to confirm that the proper and correct use of the data they access and use is appropriately maintained.

The use of AI in healthcare is not new with published guidance and professional practice for social care already considered by the Society for innovation, technology and modernisation (Socitm). However, Covid-19 has seen an emergence, adoption and use of such technologies at an accelerated rate and scale where technology, and the science behind it, is being leveraged to inform both clinical interventions and individual (patient) ownership of health management.

AI is changing the landscape of healthcare to incorporate a wider social responsibility outside traditional medical transactions and interactions; as well as treatments and interventions. This medico-tech ecosystem provides qualitative and quantitative data at a pace and form that has the potential to create a much bigger picture of health for all societies and, moreover, to inform and drive decision making for those societies outside the boundaries of health and care.

It might be said that we are on the precipice of health and social advancement – the challenge is how that is managed? Yesteryear ring-fenced data to clinicians and other health and care professionals to inform decision making and treatment options. Today we enter into a realm of AI tools where the level of (personal) granular data is unprecedented and the use of machine learning algorithms and predictive modelling are acceptable practice.

As digital professionals, indeed all technology and data stakeholders, we have a responsibility to preserve the integrity, privacy and utilisation of the data we hold. Let us maintain our ethical practices for today and our future – sign the charter and pledge support for an ethical tomorrow.

Click here for more information on the Digital Ethics Charter

Overview

For many organisations, the way in which we access and interact with their services has become increasingly internet based with online activity being encouraged in all areas of our day-to-day living. Health and care services are no different and pre-Covid, many digital innovations were already being explored and developed, with plans to implement these gradually as add-on solutions to offer an alternative access route. However, the implementation of lock-down measures in response to the pandemic meant that digital innovations became crucial to maintaining health care services for our citizens and the accelerated use of digital services quickly became the default method of interaction. The rapid and accelerated response of moving to digital solutions was a huge benefit to most, but for a variety of reasons, the benefits of the internet and digital technologies are not accessed by everyone and this has left some of our citizens behind. The Digital Inclusion workstream examines the reasons why people are digitally excluded and the steps that may be taken to address this; working in collaboration as a health and care system with all partners in the ICS. Recognising that people’s communication and access needs cannot always be met through the use of digital technologies, the ICS adopts a ‘digital first, not digital only’ approach in the design of services and embraces opportunities to engage with people and communities to develop digital services with users at the very centre of design. The digital programme has been working in partnership with Healthwatch to try and ensure that we design and implement equitable solutions to prevent digital exclusion.

Approach

An important piece of co-created research was undertaken through Healthwatch Suffolk to understand the local experiences of people using digital health and care. This was approached in two phases:

Research Phase 1

The first part of the research involved a sample of both citizens and working professionals to gather first-hand data on how they felt about the changes that had been introduced. This took the form of online surveys to gather information around four overarching and broad themes:

• The service(s) respondents had used or had an involvement with.
• Any preventative reasons respondents had encountered in accessing digital care.
• What had been good about the service(s) and what could have been improved.
• The digital changes people would like to see continue into the future.

Research Phase 2

So as not to rely solely on an online method of engagement, the second phase of the research was conducted through conversations to explore people’s experiences and perceptions of digital care through a co-produced ‘conversation toolkit’ that was developed to capture information across four key areas:

• How things had changed because of digital access to health and care.
• Factors that might, or had, prevented people from accessing digital care or support.
• How to ensure that all people can easily access treatment, advice and support when new services are being created.
• How digital health and social care should be delivered in the future.

Results

Following the research, a co-produced Guidance Document was developed with service users, patients and professionals as well as people employed by local VCSE organisations. Known as the Guiding Principles, the document outlines twelve factors that must be considered to ensure the provision of fair and equitable access across all health and care services; an equality and equity review to assess how key digital services across the ICS compare to the guidance has resulted in a subsequent ICS Equality and Equity ‘project-lifecycle’ toolkit to guide decision making for future digital services as ICS digital projects are delivered. A digital inclusion website has also been created which contains information about the services available to the public to support and enable digital inclusion. It is used by professionals to signpost citizens and is also a useful tool for identifying gaps in the provision of health and care services.

Conclusion

 

The work has influenced a number of conversations around the planning and delivery of health and care at a local, regional and national level to ensure everyone can access the care and support they need. Benefits have Included:

• A well rounded and comprehensive understanding of citizens’ needs when implementing digital services.
• A tool to support the implementation of inclusive digital services.
• The facility to signpost citizens to local sources of help or support.

Overview

The priority enabler 2 of the (2019) ICS Digital Programme seeks to secure an outcome for all people in the ICS to easily be able to access key information about their care digitally, and this includes support for the adoption of new applications and online services to help people manage their health conditions. This project aimed to tackle the challenges faced for people living with (or those supporting people who live with) dementia and underpins the digital strategic aim to empower people by creating digital channels of communication for citizens to better engage with services and to become more active partners in their health and care delivery. As part of the wider Remote Care programme of work, the project sought to deliver an application that signposts people to dementia services as well as the support that is available in each area and locality Alliance of the ICS.

Approach

Suffolk and North East Essex Integrated Care System (SNEE ICS) Working in partnership with service users, carers and professionals across the ICS, the concept of the project began in December 2019 when a mental health nurse in Suffolk began creating some prompt cards to support care workers to enhance their skills in dementia care. Through integrated working and multidisciplinary approaches, she teamed up with the Dementia Transformation lead working for the West Suffolk CCG; with the involvement of local dementia services, family carers, local care homes and the acute hospital teams, use of the prompt cards grew and grew. Many long hours were spent cutting and sticking images to create booklets of cards to give to carers and it soon became apparent that this was not going to be sustainable; and so discussions about developing a technology-based version of the cards began with the ICS Digital Team which culminated in the creation of an application that was launched on 1st May 2021.

 

Results

Branded as I-Care, the application was co-produced with carers, those living with dementia or memory concerns, support services and professionals in simple, jargon-free language. It was designed to be easy to navigate and acts as a sign-posting window to dementia services and other support offers in each of the ICS locality Alliances. Sixteen topic areas of support are included from accessing information on medications and side affects to self-care and emotions management and best interest decisions.

Conclusion

 

For many people, being diagnosed or living with, dementia can be an isolating and fearful time; presenting a confusing and unknown view of where to access help and support. This can pose significant barriers for our citizens who may need help to navigate the landscape of social, charitable and organisational services who can provide them with assistance to dementia information and support. This is an on-going project which will be managed as an up dated one-stop-shop to provide the following benefits and characteristics:

• Updated regularly, reviewed and aligned with clinical governance processes.
• Pages will be developed for professionals to use (e.g., the inclusion of a GP Q&A to supports diagnosis rates and allow GPs to find information with one click).
• Reports to be created using national data sets and Application details to understand who is using it and where, which pages are being used the most and to identify and inform what training is needed in each Primary Care Network /Integrated Neighbourhood Team.
• Potential for Commissioners to create a home page with local data and be part of the development of the application (interest has already been shown from our neighbouring ICS Norfolk and Waveney).
• Working with NHSE/I around behaviours and the use of (and alternative use of) anti-psychotic medicines.
• Linking the QR codes on posters in care homes to the application.

Overview

The challenge that existed stemmed from the need to be able to share a patient’s health and care plan between ALL authorised people involved in that person’s care, including the patient and their informal carers. This sits within the overall ICS strategy to enable better collaborative, person centred care through the effective sharing of information with all people that have a need to see it, as well as spanning the 4 enablers which form the ICS digital programme. When operating on paper-based systems across multiple users, it is impractical and unworkable to keep details and information up to date about a person’s preferences and wishes, especially about resuscitation, and it is critical to have this information available when people need it 24/7. This is known to be especially crucial when ensuring the delivery of quality end of life care and the project was stepped up to devise an electronic solution around the following parameters of functionality:

• Hold details about the person and their wishes – completed by the person who is ill to record information about them and the people important to them.
• Record and hold information around the person’s needs (e.g., communication needs, living arrangements, preferences and wishes about their treatment etc).
• Provide an end-of-life care plan that can be shared between professionals, the patient and their family and friends which provides more details about their preferences in the management and treatment of their illness as it progresses (including decisions around resuscitation aligned with ReSPECT).

 

Approach

A large-scale co-production approach was adopted involving patients, informal carers and a range of health and care professionals which enabled the project team to develop a solution with suppliers to address the individual needs of the large range of users who need to access a patient’s health and care information. Importantly, the co-production approach also achieved a sense of ownership, pride and enthusiasm for the programme as it evolves across the community. It has been clear throughout the engagement process with patients and informal carer groups, that patients are often frustrated about the need to keep repeating their stories to different professionals and not having full access to their own health and care information. This supported the findings of a survey carried out by Healthwatch about bereaved people’s experiences of death during Covid, so the solution sought to directly address these problems by enabling the patients to see their own record and be able to write directly into their own clinical record about aspects that were personally important to them, in line with PRSB standards. Whilst co-production has been crucial for the success of ROSI, the choice of technology has been of equal importance, and in particular, the adoption of open standards for data. One of the key standards chosen is called ‘openEHR’ which is a well-proven standards framework in the delivery of health and care solutions across many hundreds of millions of people in many countries outside the UK; it has had limited adoption within the UK. The project team’s choice of this technology enabled them to deliver radical changes within the ICS to support patients along their health and care journeys as the capabilities that ROSI offers is not possible with existing health and care IT systems; for the first time, true sharing of information between all health and care professionals as well as inclusive involvement of the patient has been enabled. A live pilot for ROSI will commence in September 2022 to support the End of Life needs of patients in the ‘Bury St. Edmunds Town Primary Care Network’; this pilot will include many of the agencies who support patients including GPs, Community Healthcare Team, West Suffolk Hospital, St. Nicholas Hospice Care, GP out of hours, NHS 111, the Clinical Assessment Service, and Care homes. It will be evaluated over 3 months with the intention to secure wider adoption by scaling the solution across the whole of the ICS and in different care settings such as diabetes, frailty and cancer

 

Results

This innovative project presents a number of firsts for establishing a healthcare record such as this in England

• The patient is able to write directly into their own clinical record with information of specific importance to them.
• The patient is able to permit their informal carers to also access and write into their record.
• All health and care professionals with a need, are able to access the patient’s record and edit, as is appropriate for their role.

 

The project team are presently planning the delivery of other ROSI care plans to support patients across the ICS which will yield further benefits and improvements for patients, their carer’s and their families.