Working with patients online tips for the real world

Dr. Mohammad Al-Ubaydli

Royal Society of Medicine 2009 / 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 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.

Data by patient for patient Powerful 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 at http://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 pct@patientsknowbest.com

Thank you for listening Questions please!

Dr. Mohammad Al-Ubaydli Patients Know Best

me@mo.md