The challenges and benefits of implementing and using personal health and care records
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This document discusses the challenges and benefits of implementing personal health records from the perspectives of suppliers, clinicians, and patients. It outlines how current systems fragment patient information across different providers and exclude patients from their own information. A patient-controlled integrated digital care record is proposed as a solution to integrate information and put patients in control by allowing them to share their health information with whoever they choose through granular consent options. Benefits include coordinated care through secure sharing, improved communication, remote management of care plans and test results, and collaborative care planning. The document provides examples of how Patients Know Best software enables these features and has been adopted widely in the UK and other countries.
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The challenges and benefits of implementing and using personal health and care records
- 1. THE CHALLENGES AND BENEFITS OF IMPLEMENTING AND USING PERSONAL HEALTH AND CARE RECORDS A SUPPLIER / CLINICAL LEADER / PATIENT’S PERSPECTIVE
- 2. Pharmaceuticals Pharmacies Secondary care/Hospital Community teams Employers Relatives GP Charities & Patient Advocacy Groups Government & Commissioning bodies Researchers Mobile device and app developers Patient Primary care services Specialist services THE PROBLEM – SPECIALISATION CREATES FRAGMENTATION • Difficult to connect different sources of information, due to technical and legal reasons • Patient excluded from their information, but tries to tell everyone what is happening • No-one feels in control
- 3. Hospital services GP Current ways to empower the patient gives them access to lots of information in lots of places, e.g. patient access to GP information or hospital information on a patient portal. Fundamentally flawed: • The patient doesn’t own the data • Often read-only • Tied to an organisation or a software provider • Multiple sites, multiple logins • Patient can’t share information with anyone else • They are not portable TRADITIONAL PATIENT PORTALS – CREATE EVEN MORE FRAGMENTATION Apps and devices
- 4. Pharmaceuticals Pharmacies Secondary care/hospitals Primary care health services Employers Relatives GP Charities & Patient Advocacy Groups Government & Commissioning bodies Researchers Mobile device and app developers Community teams Specialist services Social services THE SOLUTION – INTEGRATING ON THE PATIENT
- 5. DIGITAL STRATEGY IS WRONG BECAUSE IT IGNORES THE PATIENT
- 7. WorkflowData EHR Professional Economy Citizen Electronic health records: workflow for professionals to document their work… critical to getting paid for their work
- 8. WorkflowData EHR Professional Economy Citizen Patient portal Patient portal: add-on to EHR for professionals to work with patients… but this ties patient to institution rather than tying institution to patient
- 9. WorkflowData EHR Professional Economy Citizen Patient portal PHR Personal health record: workflow for patients to document their work… but not used by professional so not useful to patient
- 10. WorkflowData EHR Professional Economy Citizen Patient portal PHR IDCR Integrated Digital Care Record: single repository of all data about the patient…. but patient is locked out while patient should be only one in
- 11. WorkflowData EHR Professional Economy Citizen Patient portal PHR IDCR HIE Health information exchange: workflow to transfer data about patient…. but traditional HIEs don’t have patient consent so don’t have mandate
- 12. WorkflowData EHR Professional Economy Citizen Patient portal PHR IDCR HIE Many digital strategies incorrectly separated these technologies
- 13. WorkflowData Professional Economy Citizen Patient portal PHR IDCR HIE EHR Many digital strategies incorrectly joined up these technologies by focusing on the professional’s interest
- 14. WorkflowData Professional Economy Citizen Patient portal PHR IDCR HIE EHR Many digital strategies incorrectly let professional’s interest drive the community’s interest leaving out the patient
- 15. WorkflowData EHR Professional Economy Citizen Patient portal PHR IDCR HIE The patient’s interest should be driver The patient should be in control
- 16. WorkflowData EHR Professional Economy Citizen Pharmaceuticals Pharmacies Secondary care/hospitals Primary care health services Employers Relatives GP Charities & Patient Advocacy Groups Government & Commissioning bodies Researchers Mobile device and app developers Community teams Specialist services Social services
- 17. HOW DOES A PATIENT-CONTROLLED RECORD HELP EVERYBODY?
- 19. SECURE SINGLE INTEGRATED DIGITAL CARE RECORD (IDCR) • Held and controlled by the patient, all medical and care planning information is consolidated in one record and available to everyone in the person’s health network, including pharmacies, GPs, social services, acute hospitals, specialist centres and charities. • Available on any device connected to the internet with no software installation • The best and only scalable way of doing truly integrated digital care record (IDCR) projects • Can be the whole vertical stack from IDCR data storage patient portal personal health record or sit on top of clinician-facing IDCR with PKB’s consent layer driving permissions
- 20. CONSENT ENGINE • Granular consent to share information across services driven by the patient • Can segment record to share certain types of information, e.g. general, mental, sexual and social care datasets • Also contains permissions – allows preferences to be provided (communication) and secondary usage of data • All consent information available via API to inform other systems upstream e.g the GP should not share sexual heath information with a specific service • Legally auditable ‘break glass’ functionality for emergency access
- 21. WHAT CAN BE ACHIVED WITH A PATIENT-CONTROLLED RECORD? 2. COMMUNICATION
- 22. FEATURES: • A patient portal with a vast array of extra functionality • Message people in your network to get the right help, quickly • Conduct online video consultations and have all the information to hand • Send appointments, letters, reports, surveys, questionnaires and assessments remotely (e.g. Friends and Family Test) COMMUNICATION BENEFITS: • Deliver on patient portal/patient access to records programmes • Go paperless with the patient and save postal costs (on average £1.00 per letter) • Conduct virtual clinics and improve throughput • Improve clinical diagnosis • Push follow-up care to remote appointments and see more new patients in clinic
- 23. 3. MANAGING CARE
- 24. SYMPTOM TRACKERS, MEASUREMENTS AND RESULTS FEATURES: • Lab results and information direct to the patient from all connected sources with full medico-legal audit trail • Monitor symptoms at home, take measurements and share • Track medication compliance BENEFITS: • Reduced burden on telephone service or follow-up appointments to send and discuss results • Removes unnecessary duplication of tests • Prevent unplanned admissions through early identification of problems • Medication reconciliation increase patient safety and reduces adverse events
- 25. TELEHEALTH, SOFTWARE/APP AND DEVICE CONNECTIVITY FEATURES: • Over 100+ consumer and medical devices connected • Digital ecosystem through open APIs integrating a wide range apps and software, from decision support, health coaching and condition specific apps BENEFITS: • Cost effective at home monitoring, e.g. cheaper to provide blood pressure cuff then some someone to take reading • Supports junior staff leading patient care • Increase engagement with patients through device connectivity • Create a future-proof and scalable solution through a marketplace of apps that support every patient
- 26. 4. CARE PLANNING
- 27. SHARED CARE PLANNING FEATURES: • Complete assessments and reviews remotely • Update care plans remotely and collaboratively, e.g. change medication regimes • Embed video, podcast, webpages or other multimedia information resources • Capture national datasets, PROMS and PREMS from multiple stakeholders • Ability to create patient registries BENEFITS: • The only way to do shared care planning where each stakeholder can contribute • Supported self-management reduces unplanned admissions and service burden • Promotes patient engagement and whole system support • Coordinated care removes duplication • Reduce manual entry of patient registries • Provide cross-boundary care
- 28. 4CONTINENTS THAT PKB IS BEING USED ACROSS 9 COUNTRIES USING PKB …AND GROWING 15 WORKFLOW TOOLS FOR PATIENTS AND PROFESSIONALS 19 100 DEVICES AND APPS INTEGRATED WITH PKB 2,300,000LARGEST POPULATION COVERAGE WILL BE IN A SINGLE DEPLOYMENT 200 PAYING SITES USING PKB IN 2015 Messaging, care planning, surveys, web video, symptom tracking, resource library, appointments, home monitoring, medications… English, Dutch, Polish, French, German, Arabic, Chinese, Russian, Welsh, Spanish, Hindi, Gujurati, Greek, Swedish, Portugese, Tamil, Urdu, Turkish, Bengali LANGUAGES TRANSLATED + + + 350 YEAR-ON-YEAR 2015 GROWTH % 500,000 BIRTHS PLANNED FOR MATERNITY APP IN 2016 xy GROWTH OF PKB ADOPTION AND USAGE 1RANKED IN WORLD FOR PATIENT ACCESS TO MEDICAL RECORDS RANKED IN EUROPE FOR eHEALTH 2015 # 17 NHS INNOVATION ACCELERATOR PKB one of 17 NIA Fellows in programme to take innovation to scale in NHS
- 29. “ ” THANK YOU I really like this service... having a way of interacting with clinicians that mirrors how people use online facilities is brilliant
- 30. ABOUT PATIENTS KNOW BEST
- 31. SECURE AND SAFE • All information stored on the secure NHS N3 network in the UK, or in-country servers in other territories • Can be used in any secure environment in any country • Overcomes liability and data protection as the patient is sharing their copy of their information • Information encrypted in transit and storage • Unique private key encryption, so only the people the patient trusts can see the information • Full medico-legal audit trail • ISO 27001 compliant in the UK HIPAA in the USA
- 32. ACCESSIBLE AND INCLUSIVE Translated into 19 languages and can be changed between versions instantly • Cloud-based - No installation required or infrastructure • Designed for simplicity of use • Access information offline • Dedicated smartphone app • Compatible with all browsers
- 33. OUR DEPLOYMENTS 80+ live sites across the UK Over 200 sites live by Q2 2016 • Hospitals • CCGs • Mental health • Community services • Local Authorities (social services) • Prison and probation services • Charities • Specialist centres • Device manufacturers • Pharmaceuticals • Software providers 9 Countries worldwide
- 34. PKB IS A SOCIAL ENTERPRISE Patients Know Best is our mission statement. We achieve this by each person: 1. Owning a copy of all health information about them 2. Understanding what this information means 3. Using this understanding to make a shared decision with family and professionals The person owns all health data in his or her PKB account. Control over access to the data is legally enforced through this ownership and technically enforced through encryption. No one can decrypt these health data without the permission of the person.
- 35. CIE / PKB DEMONSTRATION
- 37. Patient Bertie Bulldog logs in to see full record
- 38. Discussions page shows all encounters and privacy labels
- 39. Diagnosis page shows all conditions and privacy labels
- 40. Laboratory page shows all test results
- 41. And each test result…
- 42. …has privacy labels for each value The source of a test result is more private than the test result is, e.g. a full blood count ordered by a GP vs a GUM clinic. Hospital pre-configures which specialties assign their data to which privacy labels for test results transferred automatically via HL7 API.
- 43. Patient can change individual test result values PKB will eventually allow a patient to classify all test results (e.g. all CD4 counts) as private regardless or who ordered them (e.g. GP vs GUM clinic).
- 44. Patient can see which teams have access to which privacy labels
- 45. Professional logging in can see data based on privacy label permissions
- 46. Professional logging in can see data based on privacy label permissions
- 47. Professional logging in can see data based on privacy label permissions
- 48. Professional logging in can see data based on privacy label permissions
- 49. If patient changes permissions...
- 50. ...changes what team sees
- 56. HOW A PROFESSIONAL CAN GAIN ACCESS TO THE RECORD
- 57. NWL professional without access to patient’s record
- 58. Professional can get explicit consent... Click “Ask for access”
- 59. ...or document existing implicit consent... Click “Ask for access”
- 60. ...or break the glass Click “Ask for access”
- 61. The implicit consent process allows documenting and proceeding to access No need to wait for patient permission, just legal audit trail and notification for patient of what happened.
Editor's Notes
- Introduction to myself. Before I start can we go round the room, can you tell me your name and your title, and one question you want to make sure I answer today. PKB built the world’s first patient- controlled records system. We are a British social enterprise and our data centre is inside the NHS N3 network. I will cover the following First give you an overview of patient controlled records and why this approach is the only way to deliver integrated care Highlight some examples of other clinical teams using the system to raise quality and lower costs Show you the system This presentation takes me 10 minutes if you don’t interrupt me but if you’re interrupting me then I’m doing it wrong. Do please dive in with your questions.
- We operate in 8 countries and they all look like this. Americans tells us PKB is from the UK because the UK has one national health service and one IT system. You and I know that’s not true, it’s like this everywhere, the issue is specialisation, and specialisation leads to fragmentation, and fragmentation leads to expensive unsafe care. And on top of that you have patients with long term conditions, such as diabetes, who are also managing their own care by doing things such as adjusting their insulin dose.
- Some people have tried to solve this with patient portals. For example you know about Patient Online the government’s program for patients to see their GP records. But the patients who use up most of your health care costs have multiple conditions and multiple providers. Having multiple portals replicates the fragmentation.
- We take the opposite approach. Everyone with information about the patient stores it in a single record for the patient. The patient gives permission for everyone to see all the information. And that’s how you deliver integrated care. But the patients are now able to see their whole record, understand their whole care, and start to self-assess and self-manage.
- Before I show you the system I want to give you a quick background about PKB.
- Once you have a single- patient controlled record you are able to coordinate care across the entire health economy.
- North West London is an example of doing this at scale to share data across health and social care. They are storing in PKB the records of 2.3 million people from 8 CCG, 5 acute trusts, over 400 gps, 4 mental health, 2 community care and 4 social health providers. One record across all of health and social care. This is possible because the patient is in control of the data sharing.
- The privacy model is the most advanced in the world and is the one that HSCIC are starting to adopt and recommend. The record is divided into general health, sexual health, mental health and social care data and the patient – or the people the patient consents to – decide which teams can see which data. So a patient who is receiving care from St Mary’s Hospital diabetes team but also the sexual health team at Chelsea & Westminster Hospital may be OK sharing their diabetic information with their social care worker but might not want to share their HIV diagnosis.
- Patients can message their healthcare providers directly.
- Great Ormond Street Hospital were the first to use this. Like all providers they were initially worried about the extra time this would take but like all our customers they were also surprised that this saved time. Patients cancelled appointments, reduced phone call, and stopped interrupting the nurses. The nurses log in once a day and answer all the questions from their patients and are able to work with patients from across the UK and abroad. Patients can attach files such as video, images or audio files. One example where this worked very well was at Peterborough hospital. A child with a seizure typically has to be admitted to hospital for 2 days to witness the seizure and diagnose epilepsy. So Peterborough encouraged the parents to use their phones to record the seizure and upload into PKB’s secure medical record. The physician can see the video, pause it, replay it, and bring in colleagues. Not only are they saving bed days, but they found that they are able to make superior diagnosis using video. For the adult team one patient was on one type of medication for 20 years based on eye-witness accounts of the seizures. Only after the video was uploaded could the clinicians see the true seizure, update the diagnosis, and correct the medication.
- PKB also provides tools for both the patient and healthcare professional to more efficiently and effectively manage care.
- For example hospital lab systems can be integrated with PKB, providing a means for instantly sharing lab results. Chelsea & Westminster is one of 14 hospitals offering this system to their HIV patients. In the UK there are 100k patients with HIV, 70K are stable, they have 3 appointments a year, 2 of them are not necessary as all they are doing is discussing their results. With PKB, 2 of these appointments can now be done remotely, saving both the hospital and the patient time.
- We connect with over 100 connective home monitoring devices. Getting the blood pressure of a patient from home over 3 months gives you a more accurate blood pressure than the one-off measurement in clinic where they might have white coat hypertension. Getting the weight and exercise patterns automatically is much better than the patient filling out a paper diary for their diabetes clinic. Getting sleeping patterns from a Fitbit changes the quality of the conversation about waking up at night for a patient on diuretics for their heart failure.
- Within PKB there is the ability to do shared care planning where each party can contribute.
- he care plan is dynamic in that you can embed video, audio, surveys, questions you may want the patient to complete before their visit. Because the care plan is so dynamic it encourages patients to engage and self manage their conditions reducing admissions. One great example of a hospital that realized an efficiency improvement as a result of PKB’s shared care planning was at Luton and Dunsable. They decided to use PKBs’ symptom tracker and care planning with their Inflammatory Bowel disease patients. Prior to PKB patients would go straight to A&E when they experienced an increase in symptoms. But now using a patient controlled system, with symptom promoting and secure messaging with the clinician, as well as protocols telling the patients what to do when changes in symptoms occur, they have seen a dramatic efficiency savings. In just one year with 500 patients, there were no A&E visits, and only 3 outpatient appointments
- Outside of the examples I have just given you we have had enormous traction in the number of deployments we have done, as well as in being recognised as #1 in the world for patient access to medical records, and #1 in Europe for eHealth.
- Well, that brings us to the end of the presentation. In summary the 3 key reasons organizations partner with PKB Extremely safe Our workflows deliver cost savings and time efficiencies that improve care When it comes to solutions in this space we have by far the most traction
- Before I show you the system I want to give you a quick background about PKB.
- PKB was the first and I believe still the only company with records hosted inside the NHS N3 network but available outside the network e.g. for social workers, charities, and of course the patient at home.
- The system has been tested to work for all kinds of users. For example it’s in 19 languages for patients who don’t speak English. It works on any computer with an internet connection, whether it’s your NHS PC with Internet Explorer 8 or the patient’s phone or library computer.
- We have partnered with over 80 paying sites, and will be in over 200 paying sites by the end this quarter (Q1 2016). I want to give you examples now of how these different teams work with their patients.
- Before I show you the system I want to give you a quick background about PKB.