Presentation by Dr Mohammad Al-Ubaydli from Patients Know Best as part of the Health 2020 conference at the Royal Society of Medicine.

1. Royal Society of Medicine
2009 / 05 / 19
Working with patients online
tips for the real world
Dr. Mohammad Al-Ubaydli

2. The banality of good
I like to focus on low-brow tips
rather than high-brow hype
Computer originally seen as barrier
between patient and GP
But you just had to turn the monitor around
Computer becomes a bridge, not a barrier
But the future really is wonderful
because of participatory medicine

3. 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
How to work online with your patients
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances

6. Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances

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

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

9. 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.

10. 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.

11. 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

12. Some definitions
Clinicians Patient
Electronic patient records Patient portals Personal health records Personal records
Our PHR helps
clinicians help
patients

13. Why do this at all?
There is no other way to cope
Aging and obesity mean more illnesses per patient
Modern medicine means more clinicians per patient
Budgets and workforce have reached their limits
Your patient is the newest and best
member of your team
Google means patient more useful than ever
Work together online to reduce stress in clinic
See: Chen 2009

14. Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances

15. Stick to patients you know
Safest for known patients
Explain that service is not for emergencies
Have a low threshold for asking patient to come in,
e.g. because an examination may uncover something
that would change your management
The longer your team has worked with the patient the
less likely they will leave out important information
Services do exist for new patients
For example, 3G Doctor has detailed questionnaire
followed by video phone consultation

16. Assume your writing is read
Your existing notes are already
owned by the patient
See: Data Protection Act and GMC guidelines Data Protection Act 1998:
All your notes may be read by a lawyer one day Responding to access requests
So write as though everyone is reading everything
5. A request for access must be made in
It is not hard to write transparently
writing, and no reason need be given.
Bad news is fine if it is written objectively, e.g. “Child Subject to any applicable exemption,
is dysmorphic”, or “I have no evidence that what
patient said is true” the applicant must be given a copy of
You must write complete notes as part of your duties as
the information and, where the data is
a doctor: do not hide the clinical truth not readily intelligible, an explanation
Protect confidential information by separate set of
(eg of abbreviations or medical
notes, just like GU specialists keep their notes separate terminology).

17. Say sorry and thank you (early and often)
The medical notes are full of errors
E-patient Dave* showed the errors in insurance-based
medical records
About 30% of medical notes have errors in them
Finding and fixing these errors is important but
laborious
Your patient will gladly help if you say
sorry and thank you
Sorry works (see: www.sorryworks.net), no one
expects perfection or cares about blame, but your
reaction determines the patient’s reaction
Saying thank you means the patient will help you even
more next time
* Dave deBronkart and I are on the Editorial Board of the
Journal of Participatory Medicine

18. Learn from patients
Online forums by and for patients teach thousands of clinicians already
Ask your specialist nurse to spend time on a forum and then teach the rest of the team what he / she learned

19. Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances

20. Protect patients from relatives…
Relatives may bully patient
You must assess whether or not the patient can make
independent decisions from their relatives
Young and disabled particularly vulnerable
If in doubt, do not grant access
Use in-person authentication
Mailing passwords means relatives can get access
Once you have in-person authentication you can
continue with electronic communication alone

21. …but make full use of relatives
Relatives are wonderfully helpful
They often care more about the patient’s health than
the patient does
They would like to help but have lacked the legal and
technical tools to pitch in
With consent, online work is excellent use
Help the family Chief Medical Officer
Typically female, forty and very busy
They have to manage the health information of
parents, children and spouse, often while employed

22. Learn how to type
You will benefit so much
Personal life: booking tickets, writing emails,
participating in forums
Daily work: everything is faster, and you do not have
to hide your typing from patients any more
If you spend an hour, you gain more than an hour
Do not wait for saviour – there is none
Retirement still leaves you with 22 years that you have
to struggle without proper typing skills
Speech recognition will never be as fast as typing,
and will not be good enough within the next ten years
Learn to fish for free at
http://tuxtype.sourceforge.net/download

23. Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances

24. Start asking for payment
US payers recognize the value of
working online by paying for it
Best outcomes when payer and clinician work together
Early adopters began before getting payments
Now get paid less for online consultations but these
take less time than in-person consultations do
No one will pay you… at first
If you don’t ask, you will never be paid
When you ask, you will still not be paid
But if you ask, then start doing the work, and have
results to show for it, you can get paid

25. We built our software for this
Secure NHS web site
Patient writes message to you
Ticks box for topic: this is what you
use for analysis in the future

26. We will help you get funding
East of England Development Agency is
funding us to work with PCTs to fund work
of clinicians
Secure messaging saves time for staff and patients
This saves money for NHS
We are teaching this to PCTs
If PCTs agree then they would fund secure messaging
This is part of world-class commissioning
Email us on pct@patientsknowbest.com

27. Dr. Mohammad Al-Ubaydli
Patients Know Best
me@mo.md
Thank you for listening
Questions please!