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1 PATIENT-CONTROLLED RECORDS: E N D - OF- L I F E C A R E P L A N N I N G PATIENT- CONTROLLED RECORDS Disrupting electronic health records

2 THE PROBLEM HEALTH CARE DATA HELD IN MANY SILOS, WHICH ARE NOT CONNECTED. Nursing homes Charities & Patient Advocacy Groups Social services Government & Commissioning bodies Researchers Hospices Relatives GP Specialist services Pharmacies Patient Secondary care/hospital Community and nursing teams Telehealth, mobile device and app developers Pharmacy 2

3 THE PROBLEM Nursing homes Charities & Patient Advocacy Groups Social services Government & Commissioning bodies Researchers Hospices Relatives MODERN HEALTH CARE BUILT ON SPECIALISATION SPECIALISATION = FRAGMENTATION OF RECORDS GP Specialist services Pharmacies FRAGMENTATION = EXPENSIVE AND DANGEROUS Secondary care/hospital Community and nursing teams Telehealth, mobile device and app developers Pharmacy 3

4 THE PROBLEM Nursing homes Charities & Patient Advocacy Groups Social services Government & Commissioning bodies Researchers Hospices Relatives GP Specialist services Pharmacies MOST HEALTHCARE I.T. VIEWED PATIENT AS ADDING TO PROBLEM Secondary care/hospital Community and nursing teams Telehealth, mobile device and app developers Pharmacy 4

5 SOLUTION: PATIENT CONTROL Community teams Government & Commissioning bodies Researchers Ambulance service Social services Hospices Relatives GP Mobile device and app developers PATIENT CONTROL IS THE ONLY LEGAL ARCHITECTURE TO JOIN UP HEALTH CARE Primary care health services Secondary care/hospitals Specialist services Pharmacies Charities & Patient Advocacy Groups 5

6 A BRIEF HISTORY OF MEDICAL RECORDS 6

7 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

8 Shared digital notes: 1970s Institutional EHR (Electronic Health Record) Adoption: UK 100% GPs 2002, 100% hospitals 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

9 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

10 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

11 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

12 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES VCs expected PHRs to replace EHRs Governments expected cost savings from HIEs Providers use tech in historical order Ambulance service Community teams Government & Commissioning bodies Researchers Social services Hospices Relatives GP Mobile device and app developers Primary care health services Secondary care/hospitals Specialist services Pharmacies Charities & Patient Advocacy Groups 12

13 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES VCs expected PHRs to replace EHRs Governments expected cost savings from HIEs Providers use tech in historical order Ambulance service Community teams Government & Commissioning bodies Researchers Social services 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 Hospices GP Relatives Mobile device and app developers Primary care health services Secondary care/hospitals Specialist services Pharmacies Charities & Patient Advocacy Groups 13

14 SOLUTION: PATIENT CONTROL INDUSTRY MISTAKES VCs expected PHRs to replace EHRs Governments expected cost savings from HIEs Providers use tech in historical order Ambulance service Community teams Government & Commissioning bodies Researchers Social services 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 Hospices GP Relatives Mobile device and app developers PATIENT CONTROL IS ONLY LEGALLY SCALABLE MODEL Primary care health services Secondary care/hospitals Specialist services Pharmacies Charities & Patient Advocacy Groups 14

15 PATIENT-CONTROLLED RECORDS ALREADY WORK 15

16 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

17 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 Test results released reduce number of appointments per patient while attracting increasing volumes of patients

18 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

19 DEVICE CONNECTIVITY 100+ integrations, including fitbit, withings, jawbone, Nike+ etc. 19

20 20

21 21

22 CHANGING ARCHITECTURE ACROSS EHR INDUSTRY Primary Care Hospitals Private Providers Voluntary Sector Social Care Research Institutes Pharmacy Outlets Patient EHR spend EHR spend Workflow Solutions Workflow Solutions Workflow Solutions Expert Systems Drug Delivery Telehealth, Quant-Self Integrating with RiO (65% UK mental health), 2 of 4 GPSoC (75% UK GPs) BMA-MOSOS (80% Dutch maternity) 22

23 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

24 TRAINING TOMORROW S DOCTORS TODAY 24

25 25

26 Thank You Any Questions? 26

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