Patients Know Best, Fjord Kitchen presentation
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1 Patient- controlled records
description
Transcript of Patients Know Best, Fjord Kitchen presentation
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P a t i e n t - c o n t r o l l e d r e c o r d s
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Patients are assets, not liabilities
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Patients are assets, not liabilities
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Patients are assets, not liabilities
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Patients are assets, not liabilities
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Patients are assets, not liabilities
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The lesson
Dr Jirjis was not unusual in making a mistake, but in recognizing it and asking patients to help
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ABOUT US
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MEET OUR TEAM / Who we are?
Dr Al-Ubaydli Dr Smith Cath Clapton Rob WhelanAuthor of two books about patient record access; physician, programmer, CEO.
Former editor of the British Medical Journal; Chair and member of international ethics and scientific committees
Specialist nurse experienced in training and change management for clinicians giving patients record access
CTO at PKB. Former developer at US e-prescribing. Works with 3rd-party developers for app integration
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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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PATIENT CONTROL
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Pharmaceuticals
PharmaciesPublic Healthcare
Private Healthcare
Nurses
EmployersInsurance
Relatives
Doctors
Charities & Patient Advocacy Groups
Government & Commissioning bodies
Researchers
Social & Community Care
Mobile device and app developers
Patient
Without patient
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Pharmaceuticals
Pharmacies
Public Healthcare Private HealthcareNurses
Employers
Insurance
Relatives
Doctors
Charities & Patient Advocacy Groups
Government & Commissioning bodies
ResearchersSocial & Community
Care
Mobile device and app developers
Without PKB With patient
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DEFINITIONS
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Patient portals
Clinicians
Electronic patient records Personal health
records Personal records
Patient
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DEFINITIONS / Electronic health records
Data by clinicians, for clinicians
Designed to increase the productivity of clinicians in a buildingBut 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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Patient portals
Clinicians
Electronic patient records Personal health
records Personal records
Patient
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DEFINITIONS / Patient portals
Easing the patient’s burden
Highly useful: scheduling appointments, ordering medication refills, secure messaging, access to the EHRBut low usage: little integrated care means low patient engagement so low return on high investment
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Patient portals
Clinicians
Electronic patient records Personal health
records Personal records
Patient
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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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PATIENT CONTROL / the only answer
Definition of patient controlThe 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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INNOVATION PLATFORM
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INTEGRATED CARE / Start small and fast
Patient control allowed GOSH to integrate with everyone
Social workers, teachers, charities, and private home health care providers all able to access and contribute to the record
Care across countries, and integration with vendors from all over the world provide the patient with the best combination of apps
Local NHS providers for each patient invited and able to accept as already built into the NHS N3 network
GOSH and non-GOSH
NHS and non-NHS
UK and non-UK
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INTEGRATED CARE / The power of control without the burden
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SHARE DATA / Across geographical boundaries
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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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WORK WITH CHARITIES / New care models
Charties delivering care and research across EU and USA
Alkaptonuria providing research across EUBarth Syndrome UK building international registry with US researchersThalidomide Trust providing x-rays and online consultations across EU
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Any smartphone developer can integrate their app with PKB
US developer built iPhone asthma app
NHS London built Android asthma app
Oxford developer building SALT app
Pharma company built HIV app
Easy to build something local or use solutions built by others
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PatientPayers
Clinicians Hospitals
Providers
Patient Advocacy/Charity
Researchers
Schematic of Data flow – Patient Advocacy a key stakeholder
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THANK YOU!Q u e s t i o n s ?
