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
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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
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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
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A BRIEF HISTORY OF
MEDICAL RECORDS
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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!
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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
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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
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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
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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)
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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
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PATIENT-CONTROLLED
RECORDS ALREADY WORK
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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
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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.
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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
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DEVICE CONNECTIVITY
100+ integrations, including fitbit, withings, jawbone, Nike+ etc.
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http://www.nesta.org.uk/blog/blueprint-open-api-medical-records
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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
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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)
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Already in 7 other countries
TRAINING TOMORROW’S
DOCTORS TODAY
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Thank You
Any Questions?
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