Personal health record (PHR) case study Myhealth@QEHB
Acknowledgements This case study is based on discussions with James Ferguson, consultant hepatologist and clinical lead for myhealth@qehb and with Anne Bingham-Holmes, a patient user of myhealth@qehb. It also draws on documents provided by Katie Squire, programme manager, at University Hospital Birmingham Foundation Trust (UHBfT) and material available on the myhealth@ QEHB website. Our thanks to James, Anne, Katie and the trust for participating in the case study. Overview Myhealth@QEHB was piloted in 2011 with twelve renal patients. A business case was developed and rollout has been incremental across the Queen Elizabeth Hospital Birmingham (QEHB) from 31 July 2012. The aim was to make the information held by the hospital available to patients to support the delivery of high quality care through increased knowledge, support and communication. There are now 10,000 patients registered to use myhealth@qehb, mostly those with long-term conditions, although it is open to all trust patients. Patients can access some of their hospital electronic patient record including test results, clinical letters, medications, care plans, appointment details and past inpatient history. Patients can record their own information (directly entered or uploaded as documents) and share it with their clinicians. Clinicians can upload this information to the hospital EPR (clinical portal), where appropriate. Tailored links to reliable information websites and other resources are available and there are plans to implement online tutorials. Users can communicate with their health team, using a secure email-like service, and can also set up and participate in their own social networks with other patients. The trust plans to start virtual clinics shortly, where the patient can log in from home to a virtual waiting room and have a video clinic appointment, with an interaction box to share information. Key recommendations > Assign clinician leadership to champion personal health records. > Adopt an incremental approach to extending services and opening new areas of the record over time. > Ensure there is patient involvement at all stages of design and development. > Requires a robust and secure registration and login process. > Make clinical letters available from a point in time, to help ensure they are high quality. > Set clear expectations for patients about secure messaging with clinicians. Methods and lessons learnt Implementation In 2010 charitable funds were acquired for a pilot. In 2011, a four-month pilot was carried out and a business case put together for wider roll-out. Despite the case being unable to demonstrate financial savings, the patient benefits secured additional funding from the trust for roll-out, which started in 2012. Roll-out has been incremental, with a phased roll-out initially to people with long-term conditions prior to making it available to all patients. Design and development University Hospital Birmingham (UHB) has an extensive electronic patient record (EPR) system, including e-prescribing, diagnostic reporting, electronic patient records, document management and a clinical portal, which brings together clinical information from a number of systems in a single view. This meant that there was a wealth of information that could be opened up to patients. A working group, bringing together clinical leads, IT and health informatics leads, patient representatives and health professionals was set up to lead the work. Patients have been involved throughout the design, development and ongoing enhancement of the system. Initially, a small group (twelve) of liver transplant patients volunteered and worked with a designer, informatics and information governance staff, to design the solution from scratch, using focus groups and webinars to discuss the designs as they were developed. A simple approach was taken initially, just displaying the information in the electronic patient record. This took around 4 months to complete. We had an honest discussion about what we wanted to see and whether or not this was feasible Anne Bingham-Holmes, patient Patients then piloted myhealth@qehb and it was evaluated and a business case developed for wider rollout. A full operational system was developed. Further refinements to make it more user friendly and to open up more information have been introduced over time in response to user needs. User feedback is logged, collated, prioritised and included in future development plans. Patient focus groups are held to discuss all new developments and patients are involved in user acceptance testing.
User recruitment and registration Patients mainly find out about myhealth@qehb from their follow-up appointment letter, when in the hospital (posters, leaflets, information screens), or via the trust website, where a link is provided to myhealth@qehb. The registration process is currently managed and operated by clinicians, but there are plans to make it open access. Initially only the consultant could sign up patients, but this has been extended to junior doctors and nurses. The process starts in the clinic where the patient is offered a myhealth@qehb account. If they accept, the clinician ticks a box in myhealth@qehb and a code is generated and given to the patient. Another code is sent to them in the post separately and both are needed to register on myhealth@qehb. When registering, patients confirm their identity, and provide a password and six questions and answers (Q&As) to use when logging in. An encrypted link is emailed to them to validate their account. The terms and conditions of use of myhealth@qehb are displayed when the user first logs in and they are asked to consent to them. On subsequent logins the patient enters their password and is randomly asked two of the six questions. The trust agreed with local clinical commissioning group (CCG) leads via a joint CCG group that GP letters held electronically by UHB could be made available to patients. A joint communication to GP practices was produced and sent to over 150 local practices. The letter informed practices about myhealth@qehb, and that GP letters would be included. It explained that if the practice did not want a patient to be able to see their letters, to let both the trust and the patient know. The letter also reminded them of the recommendation in the Caldicott review for patients to see copies of all communications. User support Video tutorials are available on myhealth@qehb, to take people through registration, log in and provide a tour of each aspect of the system. Frequently asked questions (FAQs) are also provided. There is a dedicated myhealth@qehb support team Monday to Friday 9am 5pm, who handle patient queries and refer clinical issues to the consultant or their secretary. The most common queries relate to difficulties logging on to the system. If a patient has not logged on to the system for 6 months, an email is sent to them encouraging them to log on. If they do not do so within a period of time, their account is suspended. There is an option for patients who are only seen at 6-monthly or annual clinics to opt for patient always remains active. Information sharing Patients can share their record with whomever they want (family, friends, healthcare professionals etc). They can do this either by showing their record to others or by sharing their login details with them. Patients can enter information into their record for their own monitoring or they can choose to share it with their clinicians. Clinical teams specify who they wish to receive and review patient uploads. This may be an individual clinician or a shared inbox. When information is uploaded by a patient, the clinician/ group inbox is notified by email and the clinician can click on a link in the email to view the information in a holding area and decide whether to upload it to the clinical portal. Examples include: > a diary, where patients can record how they are feeling each day to help to monitor their condition and share progress with family, clinicians, etc > diabetes patients completing information on goals, progress and issues so that this can be reviewed with the consultant at their next clinic appointment > cardiology patients who experience breathlessness recording when and what they were doing, so that they can identify patterns to discuss with their consultant. If a user identifies information that they feel is incorrect, they are encouraged to report it, so that it can be changed. Reporting test results An incremental approach by type of test was taken to making test results available, as the hospital and patients built confidence that they were not having a negative impact. Clinicians are expected to discuss the myhealth@ QEHB result reporting system with patients whilst in clinic, including normal ranges and how these may vary by patient. Whilst general test results (eg blood tests) are automatically uploaded, specialty specific results are filtered, with some (eg tumour markers) being held back until they have been seen by the consultant and in some instances until the patient has attended a specific clinic session, before being uploaded to myhealth@qehb. UHB has the availability of X-ray reports on the development plan for consideration in the future. Patients can view individual results and also produce graphs of them over time. Patients can add results of tests carried out elsewhere. The trust has also negotiated with local CCGs to make the results of tests requested in primary care available via the personal health record (PHR).
User communications with their care team Patients can communicate with their care team via a secure email-like messaging service. This may be an individual clinician, a shared inbox or a list of individual clinicians from which the patient can choose. There is no requirement or timescale for staff to respond to communications and patients are informed about this through the myhealth@qehb website terms and conditions, FAQs and by clinicians during sign-up. Social networking Patients can set up and participate in support networks with other myhealth@qehb users who select to use this feature, to share experiences, provide support and friendship. The social networks are completely outside myhealth@qehb, involving use of existing communications, eg phone, email, social networking sites. Patients can search for other myhealth@qehb users by name, address and condition and can see other users profiles (name, photo and greeting), where they have elected to make them visible (users can hide their profile page completely by setting their preference to keep me invisible ). They can then request permission to add them to their support network leading to an email request which they can accept or reject. Patients can remove themselves from a support network at any time. User perspectives A small-scale user survey (seven patients) carried out by the trust in 2014, the results of which are given below. A much broader survey of 5,000 patients is planned. Patient and staff feedback is also captured in a feedback log and reported to the myhealth@qehb project group monthly, as a consistent process for discussing and agreeing changes to continually review and refresh the system. Frequent use was identified (2 3 times per week) by 40% of respondents, with 20% using it once a week and 20% once a month. A further 10% of patients reported using it either before or after a clinic appointment. Some patients also viewed their records using their ipads whilst in hospital as they are updated in real time. The services most frequently used were reported as appointments, test results and clinical letters. In the survey patients said that they found myhealth@ QEHB had given them more control over their health, through: > keeping track of their health from the comfort of their home > being better informed and able to discuss their care in more detail with clinicians > having a better understanding of their health condition. I love having this facility and find it extremely helpful in managing my illness and being armed with the information I need to have meaningful conversations with the clinicians involved in my care patient from UHBfT survey Other benefits identified by the trust, but not yet quantified, include: > reduction of waste by reducing paper copies of letters etc > saving patients time and money, particularly those who have to travel long distances to the trust, as they can see their test results and other records online and can communicate with clinicians online, including virtual consultations > stimulating research activity, driven by patient engagement, to evaluate the broader impact and outcomes for patients. The small-scale survey showed that all patients found myhealth@qehb easy to use for both viewing and putting information into their record.
Healthcare professional perspectives Some doctors were initially nervous about using myhealth@qehb. The approach taken was to work with keen early adopters who encouraged others to implement myhealth@qehb. A major communications exercise was undertaken to listen to and allay their concerns and explain the benefits of myhealth@qehb. Clinician concerns and how they were mitigated are set out in the table below: My advice to others would be to make it part of the consultation and discuss it with every patient expected to use the service on a long-term basis UHBfT clinician, quoted in Academic Health Science Network publication Concern Loss of control Patients seeing results first Additional workload, eg being inundated with emails and phone calls Data that they would not want patients to see How it was mitigated Consultants had control over when they started using myhealth@qehb. Keener consultants were early adopters, but publication of weekly sign-up charts helped to encourage others through competition. Patients seeing their results before clinicians was not found to be an issue, rather it provides a safety net, as if the patient sees an abnormal result they are likely to contact the clinician. Specific results are held back until they have been seen by a clinician and until they have had a chance to discuss them face to face with the patient. Patients are informed that myhealth@qehb should not be used for urgent communications, nor are guarantees made about how quickly a clinician will respond. Whilst the trust has not evaluated the impact on workload formally, clinicians have not complained about extra work, nor being inundated by user messages. Consultant hepatologist James Ferguson s experience is that there are fewer patient queries as patients can obtain copies of letters, test results, etc themselves. Only letters written in the trust from an agreed point in time are available through myhealth@qehb. (There have been few requests for earlier letters from patients).
Technical perspective Myhealth@QEHB is fed by a number of trust systems. The design of the feeds is based on the following processes: > remodelling of data to present it in a more user-friendly format > overnight SQL extracts in most instances rather than real time uploads to reduce stress on trust operational systems > some real time data feeds. The information feeds from trust systems and their frequency are listed in the table below: Data Systems Frequency Upcoming events, eg appointments, held in MyCalendar Patient Administration System (ipm/lorenzo) Daily/ overnight Medications (start date, medication, dose, frequency, prescriber, end date) Laboratory test results (general eg weight, BMI, blood tests) and specialty specific PICS Telepath, PRISM, PICS flowsheets Daily/ overnight Daily/overnight. General results are automatically fed in once available in the clinical portal. Specialty specific results are only fed into myhealth@qehb once they are available in the UHB clinical portal and the patient has attended a clinic specified by clinician, where this is felt to be necessary. Inpatient admissions (dates, hospital, specialty, diagnosis, procedures, consultants, TTOs, notes) Letters (discharge, outpatients, admin, external, referral) Hospital events, eg inpatient, day case admissions, waiting list additions, outpatient appointments and attended, DNAs, cancelled, rescheduled Personal details (name, address, next of kin, etc PICS Clinical portal (from Documentum document management system) PAS (ipm/lorenzo) PAS (ipm/lorenzo) sourced from the NHS Spine. Weekly Real time, for all except referral letters, weekly Weekly Weekly GP details PAS (ipm/lorenzo) sourced from the NHS Spine Weekly
Information can also be entered by patients at any time and is made available in myhealth@qehb in real time. This includes personal details (including personal preferences for communications), appointments updated into MyCalendar, medications, updates to profile, social network updates, etc. Where patients enter result information, some value range checks are provided. Patient uploaded files (eg letters, pictures, test results) are held in MyVault. They can be uploaded into the clinical portal once reviewed by a clinician, who makes the decision about whether to upload. Patient information, eg patient reported results uploaded to the clinical portal are shown alongside those from the clinical portal, but are noted as being provided by the patient. Patient uploaded information is held in the clinical portal as a document rather than structured/coded content. Security was a key consideration in implementing myhealth@qehb and industry best practice was used as the standard. This included: > dedicated external internet service provider (ISP) for bandwidth availability and www access > separate servers, lines and networks > penetration testing of infrastructure > firewall configuration > 24/7 monitoring of myhealth@qehb site > encrypted databases > sign-up process to banking industry standard > two factor user authentication and log out after 5 minutes (to banking industry standard) > a built-in profanity filter to avoid strong language being included in patient profile.
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