PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks

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1 PATIENT-CONTROLLED RECORDS FOR Patient-Powered Research Networks Mohammad Al-Ubaydli and Emily Zhao

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PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks. Mohammad Al- Ubaydli and Emily Zhao. PKB’S ROLE WITHIN PPRN. PKB’s role within IBD PPRH HIPAA-compliant secure storage of EHR data (done) C-CDA import / export support (finishing off) - PowerPoint PPT Presentation

Transcript of PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks

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PAT I E N T- CO N T R O L L E D R E CO R D S FO RPat i e n t- Po w e r e d R e s ea r c h N e t w o r k s

Mohammad Al-Ubaydli and Emily Zhao

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P K B’ S R O L E W I T H I N P P R N

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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 CO L L A B O R AT I O N( A S U G G E S T I O N , I N C A S E T H E R E I S I N T E R E S T )

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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 alsofind 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 alsofind this integration useful

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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 alsofind this integration useful

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A B O U T PAT I E N TS K N OW B E ST

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11Pharmacy

Pharmacies

Secondary care/Hospital

Specialist services

Community teams

Employers

Relatives

GP

Charities & Patient Advocacy Groups

Government & Commissioning bodies

Researchers

Social services

Mobile device and app developers

Patient

The problem

Primary care services

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Hospital services

GP

Without PKBThe solution? Patient portals

The patient doesn’t own the data

• Often read-only

• Multiple sites, multiple logins

• They cannot be shared with others

• They are not portable

So integrated care is not possible

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Pharmaceuticals

Pharmacies

Secondary care/hospitals

Primary care health services

Employers

Relatives

GP

Charities & Patient Advocacy Groups

Government & Commissioning bodies Researchers

Mobile device and app developers

Without PKBThe solution

Community teams

Specialist services

Social services

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W H AT C A N B E AC H I E V E D W I T H PAT I E N T- CO N T R O L L E D R E CO 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

“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

“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 e-mail. It was just really hard to keep in touch” Great Ormond Street Hospital patient 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 recordCreate a health network to coordinate your careDelegate responsibility to a carer

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Invite who you trust to see and contribute to your recordCreate a health network to coordinate your careDelegate responsibility to a carer

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Lab results direct to the patientMonitor symptoms, take measurements and share

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21Pharmaceutical 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 healthcareAssessments 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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CO M PA R I S O N W I T H OT 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

PHR: complete private medical record, shared with providers and carers

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Community: sharing PROs for peer support and research

mHealth: mass automated data anonymized and aggregated

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I N T E G R AT I O N

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INTEGRATION – EASY AND OPEN

Integrating with outside IT systems through REST API / Oauth 2.0

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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Two weeks to integrate with internal hospital IT systems

1. HL7 SSL from IT team2. We take care of mapping,

security, notification3. Data available to all other

providers

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W H E R E I S PAT I E N TS K N OW B E ST

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Working with patients, across all care settings, across the world

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Over 30 sites across the UK

• Hospitals• CCGs• Local Authorities• Charities• Specialist centres• Device manufacturers• Pharmaceuticals• Software providersSpreading globally

• 2013: Australia, Hong Kong, Holland• 2014: Ireland, Belgium +10 EU coming

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F U RT H E R CO L L A B O R AT I O N( A S U G G E S T I O N , I N C A S E T H E R E I S I N T E R E S T )

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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 alsofind 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 alsofind this integration useful

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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 alsofind this integration useful

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THANK YOU!Q u e s t i o n s ?

[email protected]