PAT I E N T- C O N T R O L L E D R E C O R D S F O R
P a t i e n t - P o we r e d R e s e a r c h N e t wo r k s
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Mohammad Al-Ubaydli and Emily Zhao
PKB’S ROLE WITHIN PPRN
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PKB’s role within IBD PPRH
1. HIPAA-compliant secure storage of EHR data (done)
2. C-CDA import / export support (finishing off)
3. Blue button / Direct Message support (building now)
4. Templates for local provider to enter data for patient (Emily will work to
create with UNC / CCFA)
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F U RT H E R C O L L A B O R AT I O N
(A SUGGESTION, IN CASE THERE IS INTEREST)
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PKB would like to integrate with others in the project so that study
participants get a better experience and so that non-study participants can
use these same tools
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Integration with Validic would allow patient to show these data points to their
local provider, delivering benefits in online consultations
Non-US PKB users with IBD would also
find this integration useful
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Integration with Crohnology would allow patients to socialise their EHR data
for peer support, and bring their PROs into their consultations with their
provider.
Non-US PKB users with IBD would also
find this integration useful
8
Integration with CCFA smartphone app would make data easily available to
providers so patients are more likely to use the app and providers benefit
from data
Non-US PKB users with IBD would also
find this integration useful
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A B O U T PAT I E N T S K N O W B E S T
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The problem
Employers
Researchers
Charities & Patient
Advocacy Groups
Government &
Commissioning bodies
Primary care
services
Social services
Relatives
GP
Patient
Specialist services
Pharmacies
Secondary
care/Hospital
Mobile device and
app developers
Community teams
Pharmacy
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The solution?
Without PKB
Patient portals
The patient doesn’t own the data
• Often read-only
• Multiple sites, multiple logins
GP
• They cannot be shared with others
• They are not portable
So integrated care is not possible
Hospital services
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The solution
Without PKB
Employers
Government &
Commissioning bodies
Community teams
Researchers
Social services
Charities & Patient
Advocacy Groups
Relatives
GP
Pharmacies
Mobile device and
Pharmaceuticals app developers
Primary care health
services
Secondary
care/hospitals
Specialist services
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W H AT C A N B E A C H I E V E D W I T H
PAT 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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MONITORING /
Symptoms and
laboratory results
for clinicians,
carers and patient
Rolling out across
UK IBD units
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SELF ASSESSMENT / Patient switches treatment at home
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CUSTOMERS
“When I was younger you really had to get into contact with doctors
because you would constantly be on the phone and then they
wouldn’t be able to get back to you and then you’d have to try and
send an e-mail to someone and they necessarily wouldn’t get that email. It was just really hard to keep in touch” Great Ormond Street
Hospital patient on BBC Radio 4
“thing that I really like about this is that the focus is the right way
round and the focus is very much on the patient, and it’s the
patient who controls their notes, and who allows people to have
access to them” Dr Simon Gabe, on BBC Radio 4
Patients Know Best is probably unique. I had been trying to
find a solution like it for over a year and nothing had really
met what I had in mind for patients’ needs” Gary Hotine, IT
Director, South Devon Healthcare
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Invite who you trust to see and contribute to your record
Create a health network to coordinate your care
Delegate responsibility to a carer
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Invite who you trust to see and contribute to your record
Create a health network to coordinate your care
Delegate responsibility to a carer
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Lab results direct to the patient
Monitor symptoms, take measurements and share
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Pharmaceutical companies integrating their devices into PKB for compliance monitoring with roll-out across US-EU
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Care plans to empower home management of healthcare
Assessments and surveys completed remotely
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“
I really like this service... Maybe its the novelty, but
having a way of interacting with clinicians that mirrors
how people use online facilities is brilliant
”
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C O M PA R I S O N W I T H O T H E R P H R s
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PATIENT CONTROL – ENSURING QUALITY
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PATIENT CONTROL – ENSURING QUALITY
Two principles allow integrated care across
a health network:
1. The patient owns the data, so they
decide who gets access
2. PKB will integrate with any other system
so that the data flows to wherever the
patient chooses
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PATIENT CONTROL – HOW PPRN PARTNERS DO THIS
mHealth: mass automated data anonymized and aggregated
Community: sharing PROs for peer support and research
PHR: complete private medical record, shared with providers and carers
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I N T E G R AT I O N
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INTEGRATION – EASY AND OPEN
Two weeks to integrate with internal
hospital IT systems
Integrating with outside IT systems through
REST API / Oauth 2.0
1. HL7 SSL from IT team
2. We take care of mapping, security,
notification
3. Data available to all other providers
1. Smartphone apps for high compliance
2. Devices e.g. monitoring and injections
3. Web sites e.g. Patients Like Me, Know
Your Own Health
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W H E R E I S PAT I E N T S K N O W B E S T
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Working with patients, across all care settings, across the world
Over 30 sites across the UK
• Hospitals
• CCGs
• Local Authorities
• Charities
• Specialist centres
• Device manufacturers
• Pharmaceuticals
• Software providers
Spreading globally
•
•
2013: Australia, Hong Kong, Holland
2014: Ireland, Belgium +10 EU coming
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F U RT H E R C O L L A B O R AT I O N
(A SUGGESTION, IN CASE THERE IS INTEREST)
3232
PKB would like to integrate with others in the project so that study
participants get a better experience and so that non-study participants can
use these same tools
33
Integration with Validic would allow patient to show these data points to their
local provider, delivering benefits in online consultations
Non-US PKB users with IBD would also
find this integration useful
34
Integration with Crohnology would allow patients to socialise their EHR data
for peer support, and bring their PROs into their consultations with their
provider.
Non-US PKB users with IBD would also
find this integration useful
35
Integration with CCFA smartphone app would make data easily available to
providers so patients are more likely to use the app and providers benefit
from data
Non-US PKB users with IBD would also
find this integration useful
36
THANK YOU!
Questions?
success@patientsknowbest.com
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