Online Personalised Self-Care for Long Term Conditions Vision

1. QIPP Digital and Technology Vision work stream – Phase 2Online Personalised Self-Care for Long Term Conditions April 2011 V2

2. Contents • Scope & Vision • Business Focus – Rationale, Benefits, What is it, Who wants it. • Rationale for the Vision • Benefits Summary • What are the components • How is it delivered • Stakeholders & supporters • Technical Overview • Architecture • What is provided Nationally • Implementation of National Enablers • Benefits Case • Detail on the benefits case

3. Scope & Vision

4. Online Personalised Self Care for LTC Vision The following vision has been jointly developed by QIPP LTC and DTV workstreams • A fundamental shift in care for people living with long term conditions: • From:Not harnessing and making the most of technology to support people to be more involved in decisions about their care through personalised care planning, information and supported self care. • To: A locally driven digitally enabled holistic approach to health and wellbeing for patients and their carers, maximising self care and supporting the systematic transfer of power and knowledge to patients. A patient-centred care planning approach and shared management of conditions through the patient’s channel of choice. Overarching Vision A locally delivered online digital service for long term conditions to support self care and self management. Each locality should seek to provide: • access to online medical records (through GP practice website) • personalised care planning service(through a local site) that will allow LTC and End of Life patients and carers to be active partners in their care • sharing of electronic care plans with relevant care givers (subject to patient consent) • information flows between the medical record and the personalised care plan • connect with digital patient and carer communities and online forums and directory of local services • transact online (book appointments, see test results, online screening etc) • record details and provide reminders for medication • monitor vital signs through online smartphone applications and link with teleheath/care kit • digital delivery of targeted information, modular e-learning materials and an online self assessment tool • secure communication with the care team • provide patient / carer feedback on care and services (this will also inform the commissioning process) What should a local digital vision include? Online access to and ability to update a personalised care plan by patient / carer / integrated care team (subject to patient consent) Telehealth monitoring & self care tools linking with care plan Targeted information, signposting, modular e-learning, self assessment and service provision based on care plan, patient preferences, behaviour and locality Secure communication with a health professional through the patient’s channel of choice Links to moderated online communities, third sector and self management tools/support Ability to transact online appointment booking, test results and screening. Linked to care plan and medical record Patient feedback and service monitoring information captured. Supports commissioners to improve provision of services. Linked to commissioning toolkit Online access to medical records for patient / carer What are the key elements?

5. Online Personalised Self Care for LTC Vision What will be done nationally to support local delivery of the vision? • 1. Information standards (Minimum data set for care planning) 2. Interoperability standards • to link information from the GP system into the personalised care plan • appointment booking, test results and other GP provided digital services • link with telehealthsystems • 3. Identity and Authentication assured identity of the citizen • 4. Ability to view the personalised care plan from other settings • 5. National Directory of Local Services • 6. National Directory of eLearning Resources • 7. LTC Commissioning toolkit (developed by the LTC workstream) • 8. Policy guidance for information governance and data ownership.

6. Scope Summary A local portal providing an interactive online personalised care plan that could be shared between patients, clinicians and carers. The patient held care plan could be populated or enhanced by information flowing from open interfaces on the local clinical systems. The patient experience would include personalised and targeted information services (such as eLearning modules, local service discovery and signposted content). Patient identity management would be aligned with the cross-government Identity Assurance approach. Transactional services such as appointment booking could be requested but would still be delivered through local clinical systems.

7. Business Focus – Rationale, Benefits, What is it, Who wants it.

8. Rationale for the Proposition – Why the focus on LTCs? • There are around 15 million people living with a long-term condition in England. • These people are the main driver of cost and activity in the NHS as they are disproportionately higher users of health services – representing 50% of GP appointments, 60% of outpatient and A&E attendances and 70% of inpatient bed days. • This means 30% of the population account for 70% of the total health and care spend. • Current trends suggest significant growth in the number of very high intensity high cost users – these are often people with multiple conditions or co-morbidities. While the number of people with any long term condition should be relatively stable over the next 10 years, the number with 3 or more conditions will increase by around 60%. • Compared to social class I, people in social class V have 60% higher prevalence of long-term conditions and 60% higher severity of conditions, though this varies significantly by condition. Generally prevalence increases with age, though notably asthma is fairly steady at around 4% regardless of age. • The average annual cost of someone without a long term condition is around £1,000; which rises to £3,000 for someone with one condition and to £8,000 for people with 3 or more conditions. • The additional cost to the NHS and social care for the increase in co-morbidities is likely to be £5 billion in 2018 compared to today. • Plans need to be put in place now to address the health and social care issues facing people with multiple long term conditions. • The LTC QIPP workstreamis working to improve clinical outcomes and experience for patients with long term conditions in England. This digital vision forms part of the workstream’s ambition to maximise the use of self care and self management. • People with LTCs want to be more involved in decisions about their care, they want access to information to help them make decisions and they want to understand their condition and have more confidence to manage it. They want joined up, seamless care and do not want to be in hospital unless absolutely necessary. The digital service will provide an additional channel rather than be a complete replacement for existing support and management channels, but for those who are able and prepared to make use of it the benefits can be significant. From some informal discussions with GPs and other clinicians it is anticipated that up to 20% of LTC patients could be engaged with this types of online service.

9. Benefits Summary • NHS expenditure on LTC is baselined by: • Total number of patients with LTCs 15.4m • Percentage of NHS budget spent on LTCs 60% - 70% • LTC engagements are estimated from • Engagement volumes and unit cost by engagement type (from Channel Shift Data) • The percentage of NHS expenditure on LTCs is applied to estimate LTC engagement volumes and total expenditure, by engagement, for LTCs • Online adoption of LTC patients managing their conditions on line estimated between 7% and 20% • For their transactional consumer services, DVLA have 51% adoption while HMRC has 67% for self assessment • The projected financial benefits are: • Achievable scenario £298m (20% uptake, improved efficiencies assumed)

10. What is it • A locally delivered online personalised care planning service (through a local site) that will allow LTC and End of Life patients to be active partners in their care, working together with their care professionals (health and social care). • A digital service that enables information flows between the GP held record and the personalised care plan, the online development of the plan by the patient, and enables the digital delivery of targeted information and learning material based around the plan. • This will also allow the patient to: • connect with digital patient communities allowing patients to learn from each other through online forums • be able to transact online (book appointments, see test results, etc) including securely communicating with their care team • to actively record/ provide reminders for their medication and monitor vital signs through online smartphone applications • provide feedback on services to be able to inform the commissioning process using online rating services (e.g. “DocAdvisor”) • share their electronic care plan with relevant care givers (subject to patient consent) Target Population Level 0b: At risk population who are likely to move to Level 1 but could be delayed in onset Level 0a: Healthy population who could be prevented from getting LTCs

11. Central co-ordination to promote use of Digital Technology across QIPP workstreams and local teams: What is it – Features (services) of the digital service Online peer support & social community Personal Health Record Localised Care Pathways Online Learning Online appointment booking & repeat prescriptions BEST PRACTICE EXISTS BEST PRACTICE EXISTS BEST PRACTICE EXISTS NEEDS WORK NEEDS WORK LOCAL LOCAL LOCAL LOCAL LOCAL Access/Extraction of Medical Record Self Management Tools Online Care Planning Alerting and Intervention Online Patient & Clinician Communication BEST PRACTICE EXISTS BEST PRACTICE EXISTS BEST PRACTICE EXISTS NEEDS WORK NEEDS WORK LOCAL LOCAL LOCAL LOCAL LOCAL Targeted Content & Signposting Contact Management & Preferences Commissioning Toolkit (For LTC) Provider Ratings Patient Incentivisation BEST PRACTICE EXISTS BEST PRACTICE EXISTS BEST PRACTICE EXISTS NEEDS WORK NEEDS WORK LOCAL LOCAL LOCAL NATIONAL LOCAL Online Screening Identity & Access Management Directory of local services Online test requesting Personal Health Budgets NEEDS WORK NEEDS WORK NEEDS WORK BEST PRACTICE EXISTS NEEDS WORK LOCAL NATIONAL LOCAL LOCAL LOCAL

12. How is it Delivered • The national vision is to deliver a locally driven digitally enabled holistic approach to health and wellbeing for patients and their carers, maximising self care and supporting the systematic transfer of power and knowledge to patients. A patient-centred care planning approach and shared management of conditions through the patient’s channel of choice. • This locally delivered online service will provide a wealth of self care tools, advice, education, access to medical records and care plans and communication tools. In turn, this will ensure that patients and carers have access to timely, accurate and personalised information so they feel supported and encouraged to be a partner in their own care. [NB: the national vision is not about developing a central electronic care plan] • The role for the centre will be to support local development and delivery of this vision through the creation of a number of national levers / enablers. This is primarily through business as usual activities within the Informatics Directorate to develop standards and interoperability specifications. • The national LTC workstream will have a key role to play in the delivery. There are a number of national enablers such as the commissioning toolkit for LTCs that they will produce and publish. They will provide a consistent point of engagement with the local LTC teams to align and accelerate the adoption of digital technology to maximise patient self-care. • The local NHS will create the primary pull for the service through their commissioning mechanisms and local/regional digital initiatives. Actual delivery will either be by market suppliers or local/regional NHS development.

13. Who wants it – Key Stakeholders

14. Technical Overview

15. How would it work – Logical Architecture

16. How would it work - Narrative • Market delivered digital patient portal that provides online care planning component which adheres with a national ITK information standard. [National Enabler 1] • Patient and GP develop the initial care plan using templates setup in the GP System. The plan document is then pushed to the digital patient portal using an ITK content specification based on the information standard above. [National Enabler 2] • The patient is also able to access their GP held medical records through the GP system portal and can manually copy across any key information into their patient held record. • The digital patient portal supports the cross-government Identity Assurance standard and enables the patient to securely logon using an existing digital identity. [National Enabler3] • Targeted and personalised information is presented to the patient using sources such as a national directory of local business services and a national repository of elearning modules. [National Enabler 5 and National Enabler 6] • The digital patient portal provides integration with many personal medical devices such as blood glucose meters and enables information from these to be added to the patient held record and provide analytics and alerting.

17. How would it work - Patient Scenario • A newly diagnosed Long Term Condition patient attends an appointment with their GP to discuss their condition and to start developing a personalised care plan. • The tool used by the GP adheres with the national information standard and process guidelines for personalised care planning. During the consultation the GP discusses the benefits to the patient of using an online care plan and personal health record portal. • The local GP consortia have recently commissioned such a service to provide better support for their LTC patients. • The portal aims to help patients get targeted and personalised information about their condition, provide tailored online learning, and enable self management for the patient of their condition. • The patient agrees and the GP requests the practice administrator to create an account for the patient and with the recent development of cross Government services the patient is able to use their existing post office credentials to authenticate with the portal rather than having to create yet another set of username and passwords. • The patient receives an email with a link which asks them to authenticate via the post office service to complete the portal account setup. • Once the account is setup the GP requests that a copy of the care plan that was drafted in the GP System, together with details of the patient’s condition and medication information is sent to the patient’s online care plan. • The care plan is extracted from the GP System, by the practice administrator, to a standard format that can be interpreted by any care planning and PHR system that adopts the national standard. The care plan is then attached to a secure message within the portal and sent to the patients inbox. (No direct integration between GP System and Care Planning Portal at this point in time.) • The next day the patient receives an email notification to the hotmail account they use on a daily basis telling them that there is a new message in the portal. When they login they can see the new message from the practice and that the attached care plan has already been imported to their PHR and as a result the portal automatically tailors the suggested information and training modules that the patient should consider. • The patient decides to register for one of suggested generic online condition management training modules and completes the first module at that time, which is delivered using a mixture of video and CBT. With access to the other targeted information and having completed the first training module the patient realises they have a few question about managing their condition and decides to send a secure message from the portal to the practice asking for advice. The message is picked up by the regular triage process in the practice and one of the nurses is allocated to review the questions. The nurse replies and also requests access to see the care plan and other information held online by the patient so they can provide the best support possible. The patient receives an email notification that a new message is waiting in the portal. They are able to review the nurses response which provides them with the reassurance they need and at the same time approve the request for the nurse to have direct access to the information held by the patient within the portal.

18. Patient perspective – a view of the service (care planning) I had never thought about trying to set goals before. I can start a bit at a time to manage what I eat and do more exercise. My GP really encouraged me and helped to refine my goals and also explain …. I was able to share my plan with my spouse who was then able to provide more support to help me achieve the goals Tracking my progress using my mobile phone was really easy and I could soon see the benefits I’m really worried did not think I had a health problem There’s a lot of info to take in! I am not sure where to look for help. I did not realise that what I eat and being overweight could have such a big impact. experience Simplified pathway Initial Diagnosis Condition Information Develop personalised care plan Review & Agree Plan Share Plan Use Plan Diagnosis & Assessment No access to medical record, pathway or clearly sign-posted information. Conversation with the clinical team is focused on the medical condition and I don’t have the few actions we agreed written down to take away. Now I have access to the key information from my medical record and good information about the standard pathway for my condition I can start to think about the actions and goals that will work for me in my own time before seeing the GP. I can document them online Future

19. Patient perspective – a view of the service (manage stage) I don’t want to take more time-off work just to get my test results. I need to book my regular clinic visit I need to prepare a summary of how I have been managing since the last clinic I want to provide some feedback about the good treatment I have just had at the clinic experience Simplified pathway • Continuing Self Care Support & Management Book Annual Appointment Attend Clinic Receive Test Results Provide Clinic Feedback My busy working day made it hard to phone the clinic when they are open. I get a letter 3 days later with details of the appointment. I provide some ad-hoc information about how I feel my condition has been over the last 12 months I need to take more time off work to get the test results which were as expected. I cannot find an easy way to provide any feedback on the clinic. Now … system checks that all information/prep in place before the clinic appointment I get a text message reminder the day before the clinic appointment ( From PHR or Clinic ? ) I can share my personal care plan which includes the notes and vital signs I have recorded my-self over the last 12 months I get my test results online with comment from my GP who confirms they are within normal tolerance. No need to take any time-off work. I can use the digital service to book my clinic appointment. I opt for an email rather than letter to be sent with details of the appointment. I get a request to provide feedback about the clinic using a simple online form. Future

20. Delivery

21. How will it be delivered – Options Overview • A number of delivery options have been considered but when framed in the context of the emerging NHS structure it is clear that the customer/purchaser for an online care planning service will need to locally driven through groups of GP Consortia perhaps supported by their PCT Cluster. • In the interim the approach is to work closely with the National QIPP LTC work-stream who is starting to have the conversation with the NCB and Consortia and is also engaged with a large group of local LTC teams. The National LTC work-stream itself does not have the funding (or mandate) to commission such digital services but will have a key role in promoting the digital vision and supporting the local initiatives. • A successful digital service in this space will need significant local input to ensure it provides a localised as well as personalised capability making delivery from the centre an unattractive option. It is also recognised that market forces should be allowed to play so that there is some competition between the different digital patient portals that are expected to start emerging later in the year. • Therefore the recommended approach is to develop and promote a set of national enablers which will increase the speed of delivery of any local/regional initiatives and which can be used by any portal supplier. The next slides set out these national enablers the rationale for their selection and the proposed implementation plan.

22. Details of the National Enablers • National Enabler - National Information standard for "personalised care planning” • A minimum information standard to enable consistency of data set used in different solutions and flowing between different solutions across the health and social care system. • Used to support the health and care planning required jointly between LTC patient and their care team. • Foundation for this is examples that already exist from DH LTC Policy and NHS local initiatives. • National Enabler - Interoperability standard for information services - to link information from the GP or Departmental system into the digital patient portal • The message specification to enable repeatable/interoperable flow between clinical and Online Care Planning/PHR Systems. • Based on the information standard developed in item 1. • Also used to support the transfer of care plans between different PHR Systems. • Support multiple transports including a manual export/import. • National Enabler - Interoperability standard for information services - to link information/events from the care plan and self management portal back to the clinical systems. • The message specification to enable repeatable/interoperable flow between Online Care Planning/PHR Systems and Clinical Systems (e.g. GP, Departmental) • Foundation for this is the TeleHealth work on PHMR to enable the flow of vital signs back to GP and other clinical systems.

23. Details of the National Enablers • National Enabler – Authentication using the cross-government Identity Assurance Standards • Simple online mechanism to enable patient to re-use an existing online identity and authentication mechanism such as paypal. • Makes use of the National Identity Assurance Scheme (IDA) that is currently in development by the Cabinet Office. Based on SAML standards. • National Enabler - NHS Attribute provider including PDS matching for NHS number. • Centralises the matching of demographic details to PDS to provide NHS number and other attributes as part of an IDA based authentication process. Required for HealthSpace and potentially as a component of the emerging technology strategy. • National Enabler - Consolidated directory of local business services • An open access directory to hold information about all commissioned (and other) services. Enabling patient to search for relevant and local services. • National Enabler - Consolidated directory of online content, e-learning, and online decision aids • An open access directory to hold information about all elearning modules/resources that are available to workforce and to patients.

24. Implementation Approach for National Enablers • National Enabler - National Information standard for "personalised care planning” • Implementation: Creation of draft information standards for usage by local projects within 4 months • National Enabler - Interoperability standard for information services - to link information from the GP or Departmental system into the digital patient portal • Implementation: Creation of draft interoperability standard based upon information standard within 4 months. • National Enabler – Authentication using the cross-government Identity Assurance Standards • National Enabler - NHS Attribute provider including PDS matching for NHS number. • Implementation: Creation of a delivery programme in providing an IdA solution for Health based upon the IdA technical specifications. This would include the delivery of an IdA Hub as well as the NHS Attribute provider. • National Enabler - Consolidated directory of local services • Implementation: An assessment is proposed on the existing directories of services (Pathways Capacity Management System, NHS Choices, Choose and Book) to agree on the most appropriate directory of business services and the development and transition costs to deliver a single consolidated national directory. • National Enabler - Consolidated directory of online content, e-learning, online decision aids • This exists (eLearning Repository) and a national directory is to be recommended through the Technology Enhanced Learning Strategy (DH Workforce).

25. What’s happening currently? – Local initiatives • East of England – Electronic Personal Health Planning • In the East of England an innovative approach is being taken to deliver an eHealth portal for patients and healthcare professionals called “NHS.info” which will be free of charge to the NHS and patient. It incorporates a HealthCare application store which will provide the revenue to sustain the platform. This is planned to go live in Q4 of this year and includes a free personalised care planning application. • The portal has 5 main areas: Information; Education/Skills; Tools/Toolkits (under which the electronic PHP will sit); Support; Communication. • Yorks and Humber – Co-morbidity care planning and e-consultations • A dual approach is being taken. Care planning templates for TPP S1 are now in use and being shared across the SHA. The lead clinicians who developed these templates are now looking at how to move this approach to be online and patient-centred – this work is wrapped up with Microsoft and a small company called DHS. Their plan is to pilot the new solution at 1 practice in Q2 2011. • West Midlands/Worcester – NHS Local • Plans are being developed to enabled online care planning for a number of regions within the West Midlands. There is an existing digital platform called NHS Local which would be the natural home for such a service. The team have also been talking with DHS/Microsoft and East of England to explore how/if their capabilities could be used to deliver the care planning elements. • North West – Co-mobility care planning, condition information sign-posting • The SHA are looking at options to pilot a care planning service and have been in discussions with a company called In Touch who have developed a care planning solution “My Self Care Plan”. • Other Regions – • Oxfordshire have just deployed an online tool from InTouch called “My Self Care Plan” to support developing care plans across the region and are actively working to embed this across their GP practices. • Gloucestershire are about to go-live with the call InTouch solution in April and Bristol is also likely for the Summer.

26. Benefits Case

27. Benefits Summary for LTC online service

28. Overall Benefits and Justification for online service Qualitative Financial (National scale, £m) Enables patient partnership in care Patient Choice & Portability eLearning Transactions e.g. bookings Convenient access 24x7 Reminders for meds, monitoring Timely Alerted Responses Personal Care Plan and online development Personalised and targeted Information Improve patient self efficacy Quality & Consistency • Local evidence • West Midlands eLearning and CPD Support for staff - £50m benefit over 5 years ( Market tested ) • DH Expert Patient Programme Services demand reduction e.g. (7% in GP consultations ; 10% in outpatient visits ; 16% in A&E attendances ; 9% in physiotherapy use) – this is mainly F2F delivery; online would be a significant contributor to achieving these figures National Enabler Cost £££££

29. Commentary on estimated input parameters to Benefits Case The key parameters in the LTC Benefits Case and the rationale for the values selected are: • Online adoption of LTC patients managing their conditions on line is estimated at 20% • Best practice outside Health , but within Public Sector, for transactional consumer services are DVLA who have 51% adoption for online vehicle licensing and HMRC who have 67% online adoption rate for self assessment • The number, type and cost of patient engagements is taken from the DH Channel Shift Report, with between 60% and 70% of total costs expended on patients with LTCs • The primary financial benefits are associated with efficiency of patient engagements – reduced demand, emergency admissions, DNA rate, durations and a booking administration – realised through the online channel. • The efficiency estimates for online, and the rationale, are as follows: • Reduced number of engagements.Currently 33% of patient engagements result in “Advice/ Guidance/ No Treatment”. Online self management realises a better informed patient, able to receive personalised guidance in lieu of F2F advice. Across the various patient engagements, for those patients managing their LTCs online, we have a range of demand reduction between 0% and 8% (c/f 33% figure) • Reduced emergency appointmentssame logic and efficiency as above, with efficiency improvements ranging from 0% to 8% depending on engagement type • Reduced DNA rateNHS data quotes DNA rate of 10%; we have assumed that a reduction in DNA of between 6% and 12.5% (absolute reduction of 0.6% and 1.25%)