PATIENT-CONTROLLED RECORDS Disrupting electronic health
PAT I E N T- C O N T R O L L E D R E C O R D S : END-OF-LIFE CARE PLANNING PAT I E N T- C O N T R O L L E D R E C O R D S Disrupting electronic health records HEALTH CARE DATA HELD IN MANY SILOS, WHICH ARE NOT CONNECTED. THE PROBLEM Charities & Patient Advocacy Groups Researchers Government & Commissioning bodies Nursing homes GP Social services Hospices Patient Specialist services Secondary care/Hospital Relatives Pharmacies Telehealth, mobile device and app developers Community and nursing teams Pharmacy 2 THE PROBLEM Charities & Patient Advocacy Groups Researchers Government & Commissioning bodies Nursing homes Social services Relatives Hospices MODERN HEALTH CARE BUILT ON SPECIALISATION SPECIALISATION = FRAGMENTATION OF RECORDS GP Specialist services Secondary care/Hospital Pharmacies FRAGMENTATION = EXPENSIVE AND DANGEROUS Telehealth, mobile device and app developers Community and nursing teams Pharmacy 3 THE PROBLEM Charities & Patient Advocacy Groups Researchers Government & Commissioning bodies Nursing homes GP Social services Hospices Specialist services Secondary care/Hospital Relatives Pharmacies MOST HEALTHCARE I.T. VIEWED PATIENT AS ADDING TO PROBLEM Telehealth, mobile device and app developers Community and nursing teams Pharmacy 4 SOLUTION: PATIENT CONTROL Government & Community teams Commissioning bodies Researchers Social services Ambulance service Relatives Hospices Mobile device and app developers GP PATIENT CONTROL IS Primary care health THE ONLY LEGAL services ARCHITECTURE TO Secondary JOIN UP HEALTH CARE care/hospitals Charities & Patient Advocacy Groups Specialist services Pharmacies 5 A BRIEF HISTORY OF MEDICAL RECORDS 6 Without PKB Without PKB Shared paper notes “Dr. Plummer invented the modern dossier record system which quickly replaced the ledger system and became the model for medical records worldwide. Each patient is registered and assigned a clinic number. Each patient also has a special envelope -- filed by clinic number -- in which all patient history is placed. That way, no matter how many visits, a full record is maintained.” Source Mayo Clinic This had never happened before 1905! 7 Shared digital notes: 1970s Institutional EHR (Electronic Health Record) Adoption: UK 100% GPs 2002, 100% hospitals 2018. All OECD have plans, Portugal forced to complete as part of EU bailout Problems: does not have the record from other institutions’ EHRs, duplication of effort, accumulation of errors in silos 8 Shared digital notes: 1980s Regional HIE (Health Integration Engine) Adoption: most governments have variety of plans at local, regional, state and inter-state levels Problems: no patient consent, instead relying on implied consent of 99% of population for local GP and hospital data sharing, so cannot scale to other regions, social care, charities, pharmacies, researchers 9 Shared digital notes: 1990s Patient portal (or tethered PHR) Adoption: a few early adopters, the rest are hearing politicians bully them into adoption and are scared of the impact Problems: reproduces silos, no capacity for patients to understand data, no capacity for clinicians to cope with demands 10 Shared digital notes: 2000s Consumer PHRs (Personal Health Records) Adoption: early efforts by large consumer technology companies and countless start-ups Problems: PHRs cannot integrate with EHRs, so only 1% of people interested in using them, they are healthy and wealthy, so no effect on real healthcare budget. (Even those with chronic diseases only use PHRs when well, as soon as they become unwell and use the healthcare system they stop using PHRs, focusing back to EHRs) 11 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES • VCs expected PHRs to replace EHRs • Governments expected cost savings from HIEs • Providers use tech in historical order Government & Community teams Commissioning bodies Researchers Social services Ambulance service Relatives Hospices Mobile device and app developers GP Primary care health services Secondary care/hospitals Charities & Patient Advocacy Groups Specialist services Pharmacies 12 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES •VCs expected PHRs to replace EHRs •Governments expected cost savings from HIEs •Providers use tech in historical order PATIENT CONTROL CRUCIAL •PHRs useless w/o EHRs •HIEs consent model can’t scale •Patient portal workflow makes EHRs productive •PHR consent makes HIEs scale •Start with patient control Government & Community teams Commissioning bodies Researchers Social services Ambulance service Relatives Hospices Mobile device and app developers GP Primary care health services Secondary care/hospitals Charities & Patient Advocacy Groups Specialist services Pharmacies 13 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES •VCs expected PHRs to replace EHRs •Governments expected cost savings from HIEs •Providers use tech in historical order PATIENT CONTROL CRUCIAL •PHRs useless w/o EHRs •HIEs consent model can’t scale •Patient portal workflow makes EHRs productive •PHR consent makes HIEs scale •Start with patient control PATIENT CONTROL IS ONLY LEGALLY SCALABLE MODEL Government & Community teams Commissioning bodies Researchers Social services Ambulance service Relatives Hospices Mobile device and app developers GP Primary care health services Secondary care/hospitals Charities & Patient Advocacy Groups Specialist services Pharmacies 14 PATIENT-CONTROLLED RECORDS ALREADY WORK 15 PATIENT CONTROL IS NOT NEW Maternity notes in UK: paper-based patient control for decades Perinatal Institute / PKB: Digitizing now for 50% of England’s babies 16 DISEASE-SPECIFIC PORTALS BUILD UP WHOLE RECORD Gastroenterology IBD Inflammatory bowel disease symptoms monitoring, home testing and personal care plans. 520 patients, 3 OPAs, no hospital admissions. Alkaptonuria Rare disease national centre of excellence working with national charity. Integrated lab systems to give patients full records while collecting data from patients for research. HIV 14 hospitals using PKB for patients with HIV since 2013. Test results released reduce number of appointments per patient while attracting increasing volumes of patients. 17 17 SYMPTOM TRACKERS, MEASUREMENTS AND RESULTS Lab results and information direct to the patient Monitor symptoms at home, take measurements and share Track medication compliance through Automatic Medication Management 18 DEVICE CONNECTIVITY 100+ integrations, including fitbit, withings, jawbone, Nike+ etc. 19 http://www.nesta.org.uk/blog/blueprint-open-api-medical-records 20 21 CHANGING ARCHITECTURE ACROSS EHR INDUSTRY Primary Care EHR spend Hospitals EHR spend Private Providers Voluntary Sector Social Care Research Institutes Pharmacy Outlets Patient Workflow Solutions Workflow Solutions Workflow Solutions Expert Systems Drug Delivery Telehealth, Quant-Self 22 Integrating with RiO (65% UK mental health), 2 of 4 GPSoC (75% UK GPs) BMA-MOSOS (80% Dutch maternity) BOTTOM UP DRIVES TOP DOWN Over 50 sites across the UK in 2014 (160+ sites in 2015) • • • • • • • • Hospitals CCGs Local Authorities (social services) Charities Specialist centres Device manufacturers Pharmaceuticals Software providers Large deployments • 10 disease areas at 10 sites each • 50% of maternity units (Perinatal Institute) • All of metropolitan area (all CCGs, hospitals, mental health and social care) 23 Already in 7 other countries TRAINING TOMORROW’S DOCTORS TODAY 24 25 Thank You Any Questions? 26
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