Patients Know Best (Twitter: @patientsco)

Patient-controlled medical records

Patients are assets, not liabilities

Patients are assets, not liabilities

Patients are assets, not liabilities

Patients are assets, not liabilities

Patients are assets, not liabilities

Dr Jirjis was not unusual in making a mistake, but in recognizing it and asking patients to help

Trained as physician at the University of Cambridge.

Trained as programmer and worked as NIH Staff Scientist.

Honourary Senior Research Associate, UCL Medical School.

Continuing research on PHRs from 2,700 US hospitals, new book in 2010: book.patientsknowbest.com

Designed by a patient…

1. The innovation: How PKB works

2. The secret: True patient control

3. Integrated care: Only possible through patient control

Agenda

Conduct online consultations which are seen by all clinicians in team

Maternity service women entering data from home monitoring

RCPath explanations for patient save clinician’s time

Symptoms can be entered from web site or smartphone for clinic review

Diary allows patient or parent to keep track of appointments and developments

Patient or parent can discuss problems with clinical team

Treatment plans for asthma educate families / teachers / GPs and reduce A&E visites

1. The innovation: How PKB works

2. The secret: True patient control

3. Integrated care: Only possible through patient control

Agenda

Some definitions

Patient portals

Clinicians

Electronic patient records Personal health

records Personal records

Patient

Some definitions

Patient portals

Clinicians

Electronic patient records Personal health

records Personal records

Patient

Data by clinicians for clinicians

Some definitions

Patient portals

Clinicians

Electronic patient records Personal health

records Personal records

Patient

Easing the patient’s burden

Scheduling appointments

Ordering medication refills

Secure messaging

Access to the EPR

See: Pyer et. al 2004, Ralston et. al 2007.

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

Institution-control does not work

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)

Patient control is the only answer

Some definitions

Patient portals

Clinicians

Electronic patient records Personal health

records Personal records

Patient

Patient is only practical and legal link across all providers

Some definitions

Patient portals

Clinicians

Electronic patient records Personal health

records Personal records

Patient

Markle Foundation’s ideal PHR:

Access controlled by patient

Lifelong records

Information from all

Universal access

Private and secure

Transparent

Easy exchange

See: Connecting for Health, 2004

1. The innovation: How PKB works

2. The secret: True patient control

3. Integrated care: Only possible through patient control

Agenda

Integrated care

Patient control allowed GOSH to integrate with everyone

GOSH and non-GOSH

NHS and non-NHS

UK and non-UK

Health and non-health

Global platform forlocal innovations

Invite local GPs instantly

Specialist nurse or carer can invite on behalf of patient

Share data with any other hospital

Great Ormond Street Hospital transferring data to St Mark’s Hospital for smoother handovers

Work with innovative providers

Work with charities

Scanning and uploading all past x-rays

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

Researchers building data collection apps

Easy to build something local or use solutions built by

others

Private insurance CMS

Patientusing patient-

controlled medical

records system

Payers

Clinicians Hospitals

Providers

Patient Advocacy/Charity

Researchers

Schematic of Data flow – Patient Advocacy a key stakeholder

Thank you for listening

Mohammad Al-UbaydliPatients Know Bestteam@patientsknowbest.comwww.patientsknowbest.com