Working with patients online

tips for the real world

Dr. Mohammad Al-Ubaydli
 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
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
University of Cambridge’s
Addenbrooke’s Hospital:
our first customer conducts
online consultations
Customers 2 and 3: private health provider and
NHS children’s hospital (15 others to join)
Detailed explanations
for patient save
clinician’s time
 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
 Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Some definitions
Clinicians Patient

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

Electronic patient records Patient portals Personal health records Personal records

Data by clinicians
for clinicians
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.

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.
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

Some definitions
Clinicians Patient

Electronic patient records Patient portals Personal health records Personal records

Our PHR helps

clinicians help
patients
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

 Roadmap
1. Basics: definitions, and why do this at all?

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

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

4. Finances
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
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
 Dr. Mohammad Al-Ubaydli
Patients Know Best

me@mo.md

Thank you for listening

Questions please!