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Working with patients onlinetips for the real world
Dr. Mohammad Al-Ubaydli
Royal Society of Medicine2009 / 05 / 19
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
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
A bit about me…
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
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Roadmap
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.
Some definitions
Patient portals
Clinicians
Electronic patient records Personal health
records Personal records
Patient
NHSmail users have mailbox shrunk06 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.
Data by patient for patientPowerful but unstructured
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
Some definitions
Patient portals
Clinicians
Electronic patient records Personal health
records Personal records
Patient
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
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Roadmap
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
All your notes may be read by a lawyer one day
So write as though everyone is reading everything
It is not hard to write transparently
Bad news is fine if it is written objectively, e.g. “Child is dysmorphic”, or “I have no evidence that what patient said is true”
You must write complete notes as part of your duties as a doctor: do not hide the clinical truth
Protect confidential information by separate set of notes, just like GU specialists keep their notes separate
Data Protection Act 1998: Responding to access requests
5. A request for access must be made in writing, and no reason need be given. Subject to any applicable exemption, the applicant must be given a copy of the information and, where the data is not readily intelligible, an explanation (eg of abbreviations or medical 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
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Roadmap
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 athttp://tuxtype.sourceforge.net/download
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Roadmap
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
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 [email protected]
Thank you for listeningQuestions please!
Dr. Mohammad Al-UbaydliPatients Know Best
