Health Informatics Unit Personal health record (PHR) Case study My medical record at University Hospital Southampton NHS Foundation Trust Funded by
Acknowledgements This case study is based on discussions with Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care; Adrian Byrne, director of informatics and Kevin Hamer, IT development services manager. It also draws on material presented at University Hospital Southampton personal health record (UHS PHR) seminar on 16 March 2016. Our thanks to Arvind, Adrian and Kevin and the trust for participating in the case study. Overview University Hospital Southampton (UHS) has around 2,000 My medical record users, with around 50 new users being added per week. UHS provides My medical record to five other NHS organisations and once their users are included, the expectation is that the total number will increase to up to 10,000 users during 2016. The personal health record (PHR) can be accessed on a range of devices, including mobile phones. The services provided include: > access to the medical record (including letters and other documents, medications and investigation results) > communication with the care team via secure messaging, with messages stored in the record > completion of online surveys, diaries and questionnaires (eg pre-admission assessment, health MOT) > appointment booking/cancelling/rebooking > information recording (eg demographics, allergies, medications) and use of devices to enter results > information on conditions and treatments, including training videos > registration for research projects. Key recommendations > Start with pathways for patients with long-term conditions. A business case exists for patients with long-term conditions and regular contact with the trust, but not yet for patients who would require infrequent/limited use. > Clinical leadership and the willingness to drive through implementation are key. > Re-design the whole clinical process supported by the PHR, led by the clinical team and patients. > Have clear clinical management protocols where patients are self-monitoring, eg circumstances for contacting or recalling patients, to ensure patient safety. > Ensure that the patient registration process and logging on are easy and quick. Methods and lessons learnt Business case Initially, UHS s implementation plan focused on clinical pathways for people with long-term conditions, such as Crohn s disease, prostate cancer, lymphoma and ulcerative colitis, who are in regular contact with hospital. There is now a business case, covering wider roll out to other condition-specific pathways, for which cost savings and improved outcomes have been identified. This is largely through patients self-managing/ monitoring and hence reducing the number of outpatient attendances. There are also time savings for clinicians. An evaluation of My medical record is being carried out by Southampton University, with some initial findings available for use in the business case. The full report is due by summer 2017. The business case identified the following benefits: Nursing time saved through use of messaging function versus phone calls. Electronic messaging can be auto-exported to notes and reporting for billing versus the current situation where nurses put the phone down and then have to replay the conversation inputting the details into electronic notes and recording a telephone contact. Success of this system (as it has proved popular with patients) has seen number of phone calls drop significantly and staff feel they can structure their time better without interruptions and around agreed response times. Estimated saving: 1 hour of time per nurse per specialty per day Electronic document delivery. This is already happening but the trust intends to take this further by allowing patients to opt out of letters by post (similar to how banks operate). Estimated saving: 360 800k per year depending on scale achieved There is potential for a reduction in readmission fines. There is evidence that the more patients self-support and have easy access to early intervention when in flare (eg inflammatory bowel disease), the greater the reduction in emergency department (ED) attendances, admissions and re-admissions. Estimated cost avoidance: 240 405k per year An experienced cancer nurse specialist can review 20+ patients via My medical record in an hour, while a traditional outpatient clinic would see on average about six patients per hour. A pre-assessment risk questionnaire for peri-operative patients piloted on My medical record showed savings of between 30 and 60 minutes per patient in nursing time. There was also less waiting time in clinics and shorter appointments. However, the need for/pattern of ongoing use by this cohort of patients is not yet clear. The trust is also extending access to people who don t have a pathway to improve the service to patients, although an economic case for this has not yet been established. As licence fees are applied based on user numbers, where the PHR is only accessed a few times (eg to complete a pre-assessment questionnaire and view a discharge summary), the licence costs would not be balanced by savings. The trust is hoping to establish a model that works for limited/infrequent use. 1
Implementation The implementation approach involves reviewing the entire workflow within a clinical pathway and changing processes supported by My medical record. The new design needs to be beneficial for patients and usable by staff. The approach involves: > identifying a clinical lead who is able to provide sufficient input to drive implementation within their service/team > engaging the clinical team in the re-design of each pathway, incorporating use of My medical record. Patients are also involved in the work, including, for example, decisions about timing for release of investigation results (see example pathway for prostate cancer below) > the clinical teams developing clinical management protocols for each pathway, including: > eligibility criteria for use of My medical record (ie where clinically safe to do so) > clinician monitoring arrangements > safety nets to address patient safety risks where patients are self-monitoring. > mocking up a demo version of My medical record for review > piloting with the clinical team and a small number of patients prior to wider rollout. Figure 1: UHS prostate patient outpatient pathway/process map for patient-triggered follow-up (PTFU) 2
User recruitment and registration A simple registration process is vital to adoption and the method used has been simplified over time. The registration model involves: > preliminary screening of the patient by a clinician to determine eligibility, where a clinical pathway requires this. > sign up in clinic with a staff member (for example a doctor, nurse or administrator) vouching for the patient and completing a simple web registration form, which includes patient consent. This includes an explanation of My medical record to the patient and provision of written information. Patients do not need to make a decision at the time and where they need more time, a follow-up call is made. > taking email and mobile phone details so that the patient can be emailed login details and a guidance leaflet, and receive a password via SMS text message. For the prostate cancer service a half day supported selfmanagement workshop is also held for groups of men to explain how self-monitoring works, how to read their prostatespecific antigen (PSA) level results, communicating with the care team and what to do if they have concerns. I also was one of the early patients on the patient initiated follow-up scheme for prostate cancer (brilliant scheme, I hope it continues). The two nurses who ran that were also excellent. When my PSA started going up a few months later, I spoke with them and they discussed my problems with the consultants and got back to me the very same day. When the problem continued, they arranged an appointment for me to see my consultant within 2 weeks. What is even more surprising and totally unexpected was that one of them came to my appointment to ensure I was ok. That was a lovely thing to do, and much appreciated. Prostate cancer patient Information sharing Patients can grant access to relatives. A separate user ID is provided for each relative. Multiple relatives can manage a user s record (eg where the individual lacks consent and the relatives have Lasting Power of Attorney or where the user is a child). There is also a single use login available, which is carried by the patient and which can be used for example when a patient attends the ED, which gives one time access to the user s record. User perspective young people at transition My medical record is currently used by between 45 and 55 of Dr Arvind Nagra s patients. These patients are young people with nephrological conditions. Use will be extended to other clinicians in her team shortly. Dr Nagra became involved in My medical record when she saw how it was being used to empower patients in adult services to manage their condition and saw the potential for similar use by young people. Having been involved in the development of the national Ready Steady Go programme for transition from paediatric to adult services, she saw the potential for My medical record to support this programme. A particular focus was the Ready Steady Go transition plan. In addition to the standard My medical record functions, a Ready Steady Go online questionnaire is provided for use by young people and care professionals to assess readiness for transition to adult services. Dr Nagra is enthusiastic about the use of My medical record for research projects. Patients can see research protocols online and register for projects which are of interest. They can also complete online surveys. This provides possible timesaving benefits. GPs have been approached via the Local Medical Committee, as access to their patients transition plans (with consent) would be useful. Although interested, the lack of integration with their systems and the need to access multiple systems were raised as issues. Rather than uploading information leaflets, which can be too generic and get out of date, Dr Nagra provides links in messages to specific and relevant information sources, such as those provided by the British Association of Paediatric Nephrologists, Renal Association etc. She sees national resources developed by patient or professional bodies as the best source of such information. Dr Nagra can see the potential for providing many more services through My medical record, eg food/diet diary, bladder charts, purposeful games (eg supporting medications adherence, mood monitoring). National resources, possibly developed by patient/professional bodies and made freely available, would avoid trusts having to develop their own. 3
Technical perspective At a high level, the technical architecture of My medical record involves separation of services for flexibility and openness: identity services, and separate presentation, integration and data layers. HealthVault provides the PHR services for My medical record. My medical record is populated by near real-time data feeds from trust IT systems via the trust network. Access to My medical record is via secure HTTPS. See Figure 3 for the overview diagram below. Figure 3: My medical record network UHSFT = University Hospital Southampton Foundation Trust The Intersystems HealthShare integration engine is used to enable data feeds between My medical record and trust patient systems. The integration arrangements are set out in the diagram above. 4
Figure 4: My medical record integration engine Integra5ng other sites PSA, demographics pa1ent held record UHSFT network Other trust network NHS N3 Network Trust Integra5on Engine (TIE) SSL or VPN connec1on Between each TIE Ini1al registra1on message PSA, demographics Trust Integra5on Engine (TIE) ED = emergency department PMI = patient master index EPR = electronic patient record system TIE = trust integration engine ecamis = the trust management information system The trust has found it difficult to get access to GP practice systems to include primary care data in My medical record. They are hopeful that the InterOpen/Code4Health work on open APIs (Application Programming Interfaces) into practice systems will help with this. A work around may be possible, eg providing access to GP data via another source, such as the Hampshire Health Record. 5
Health Informatics Unit Royal College of Physicians 11 St Andrews Place Regent s Park London NW1 4LE Tel: +44 (0)20 3075 1484 Email: informatics@rcplondon.ac.uk www.rcplondon.ac.uk/hiu