1. Patient-controlled
records
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2. Patients are assets, not liabilities
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3. Patients are assets, not liabilities
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4. Patients are assets, not liabilities
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5. Patients are assets, not liabilities
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6. Patients are assets, not liabilities
Dr Jirjis was not unusual in making
a mistake, but in recognizing it
and asking patients to help
The lesson
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7. ABOUT US
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8. MEET OUR TEAM / Who we are?
Dr Al-Ubaydli Dr Smith Cath Clapton Rob Whelan
Author of two books Former editor of the Specialist nurse CTO at PKB. Former
about patient record British Medical Journal; experienced in training developer at US e-
access; physician, Chair and member of and change management prescribing. Works with
programmer, CEO. international ethics and for clinicians giving 3rd-party developers for
scientific committees patients record access app integration
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9. ABOUT US / Our products
Patient-controlled records
Two principles allow
integrated care across CCGs:
1. The patient owns the data,
so they decide who it goes
to
2. PKB will integrate with any
other system so that the
data flows to wherever the
patient chooses
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10. PATIENT CONTROL
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11. Without patient
Researchers
Insurance Employers Government &
Commissioning bodies Social & Community
Care
Charities & Patient Relatives
Advocacy Groups
Patient
Doctors
Private Healthcare
Pharmacies
Public Healthcare
Nurses Pharmaceuticals Mobile device and
app developers
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12. With patient
Without PKB
Employers Government & Researchers
Commissioning bodies
Insurance Social & Community
Care
Charities & Patient
Advocacy Groups Relatives
Doctors Pharmacies
Mobile device and
Public Healthcare Nurses Private Healthcare Pharmaceuticals app developers
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13. DEFINITIONS
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14. DEFINITIONS / Electronic health records
Data by clinicians, for clinicians
Designed to increase the productivity of clinicians in a building
But does not work with clinicians in other buildings (so care is not integrated)
Nor does it work with the patient (misses the most important stakeholder)
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15. DEFINITIONS / Patient portals
Easing the patient’s burden
Highly useful: scheduling appointments, ordering medication
refills, secure messaging, access to the EHR
But low usage: little integrated care means low patient
engagement so low return on high investment
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16. INSTITUTION CONTROL / does not work
Everyone creating a patient portal
is trying to do the right thing
• Institution-specific e.g. hospital web site
or NHS mandate for GP record access
• Disease-specific e.g. cancer portal
Yet approach is wrong because it
does not focus on the patient
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17. PATIENT CONTROL / the only answer
Definition of patient control
The patient can revoke the access to the
record of the original institution that gave
the patient the record, without affecting the
patient’s ability to use the record with
others
All else is institution control
(Do not be fooled by “shared control”, the
right to exclude others can only be held by
one party)
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18. INNOVATION PLATFORM
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19. INTEGRATED CARE / Start small and fast
Patient control allowed GOSH to integrate with everyone
GOSH and non-GOSH
Local NHS providers for each patient invited and able to accept as
already built into the NHS N3 network
NHS and non-NHS
Social workers, teachers, charities, and private home health care
providers all able to access and contribute to the record
UK and non-UK
Care across countries, and integration with vendors from all over the
world provide the patient with the best combination of apps
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20. INTEGRATED CARE / The
power of control without the
burden
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21. SHARE DATA / Across geographical boundaries
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22. COMMISSIONERS / Work with innovative providers
Dementia UK’s WANDA case management system
Dementia UK integrating with PKB to share care plans with patient and carers, and integrate with rest of health care system
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23. WORK WITH CHARITIES / New care models
Charties delivering care and research across EU and USA
Alkaptonuria providing research across EU
Barth Syndrome UK building international registry with US researchers
Thalidomide Trust providing x-rays and online consultations across EU
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25. Schematic of Data flow – Patient Advocacy a key stakeholder
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26. THANK YOU!
Questions?
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