Copyright, Mohammad Al-Ubaydli, Patients Know Best, 2011

1. Giving patients control
of their health records
Dr Mohammad Al-Ubaydli

2. Patient is king
Most do not know this yet
This is beyond commerce (although the
customer certainly ought to be king)
It is because of specialization: the power
of modern medicine is also the
powerlessness of professionals
Only the patient has enough information
to co-ordinate care across specialists
Patient will only become
more important

3. Give patient their record so they
can manage health care (system)
“Patient control of records could
be considered the equivalent of
letting council house tenants buy
their houses – not only did it give
them assets that they could benefit
from the assets benefited from the
care of the owners”
Young Foundation describing
impact of Patients Know Best
Connect: Patients and the Power
of Data. See: http://bit.ly/dEQwkj

4. A bit about me…
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

5. Roadmap
1. Basics: definitions, and why do this at all?
2. Today: letting go of assumptions
3. Successes: case studies
4. Tomorrow: embracing possibilities

6. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records

7. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records
Data by clinicians
for clinicians

8. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records
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.

9. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records
Data by patient for patient
Powerful but unstructured
NHSmail users have mailbox shrunk
06 Feb 2008
NHS staff who use the health service’s email service NHSmail have been informed that
after a recent move to Microsoft Exchange their mailbox size has been capped.
Some 80% of NHS accounts have been capped at just 200Mb, which
appears miserly compared with the hefty 6Gb offered by Gmail for free, or
the 5Gb offered for free on Windows Live Hotmail.

10. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records
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

11. Roadmap
1. Basics: definitions, and why do this at all?
2. Today: letting go of assumptions
3. Successes: case studies
4. Tomorrow: embracing possibilities

12. Patient-held records already here
Some parts of some health systems have already had them
In continental Europe and much of developing world, this is the norm
UK private health care, and US fragmented care, patients end up doing this anyway
NHS maternal notes and child personal health record use the patient to cross silos
Distribution is arbitrary, but users assume otherwise

13. Conflict is gone
Discomfort clinicians feel is due to limitations of paper
Piece of paper cannot be in two places at the same time
Transporting paper takes time and money
Clinicians do not feel safe unless they hold the only copy of the paper
Digital records eliminate the conflict

14. Patient-controlled records awesome
This is the only way to bridge the silos
Within “integrated” systems like NHS and Kaiser Permanente, clinicians do not talk to each
other across community and hospitals
Within single institution e.g. hospital, clinicians do not talk to each other across departments
Within same department, clinicians do not talk to each other across specialities
The patient is the only person who turns up to all the
appointments, so give them the records

15. Patients should manage their clinicians
Unique patients require truly patient-centred care
In a rare chronic disease, the patient knows more than most of the clinicians they meet
There are 30 million people with rare diseases in Western Europe and the USA (GCC will
have higher rates from cousin marriages)
But even patients with common diseases have unique combinations of diseases and
circumstances
Every patient is unique

16. Roadmap
1. Basics: definitions, and why do this at all?
2. Today: letting go of assumptions
3. Successes: case studies
4. Tomorrow: embracing possibilities

17. Our customers
Use our platform to save money
from shared workflow
1. Great Ormond Street hospital wanted
home health care electronic prescribing
2. UCL Hospital wanted personal health
plans with asthma patients
3. Novartis wanted research on COPD
We can do what Microsoft,
Google and the NHS cannot do

24. Conduct online
consultations
which are seen
by all clinicians
in team

25. Great Ormond Street Hospital and home health
care providers

26. Detailed explanations
for patient save
clinician’s time

27. Personal health plans
Teach patient to teach team

28. Roadmap
1. Basics: definitions, and why do this at all?
2. Today: letting go of assumptions
3. Successes: case studies
4. Tomorrow: embracing possibilities

29. Patients with HIV publishing all notes

30. Patients use (much) better tools than clinicians

31. Patients use (much) better tools than you

32. Patients have better genetics tools than
99% of clinicians do (or ever will)

33. Patients will collect data you never knew

34. Patients will collect data you never knew
Useful web sites
Patients Like Me for HIV: patientslikeme.com
23andMe for genetic sequencing: 23andme.com
RelifeInSite for pain documentation: reliefinsite.com
Lifepsychol for monitor quality of life: lifepsychol.com
Personal health records: A guide for clinicians
Al-Ubaydli, 2011, John Wiley & Sons
http://book.patientsknowbest.com

35. Patient-reported outcomes /
observations / information
Patient-controlled records as a research tool
Patient-reported outcomes on each consultation
Patient-reported observations on data that had never previously been collected in medical records
Patient-reported information through sentiment analysis of diaries

36. Mohammad Al-Ubaydli
Patients Know Best
team@patientsknowbest.com
www.patientsknowbest.com
Thank you for listening