2009.11.12.working With Patients Online

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 Electronic patient records

Patient Patient portals

Personal health records

Personal records

Some definitions Clinicians Electronic patient records

Data by clinicians for clinicians

Patient Patient portals

Personal health records

Personal records

Some definitions Clinicians Electronic patient records

Patient 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 Electronic patient records

Patient 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.

NHS accounts have been capped at just 200Mb, which appears miserly compared with the hefty 6Gb offered by Gmail for free, or Some 80% of

the 5Gb offered for free on Windows Live Hotmail.

Some definitions Clinicians Electronic patient records

Patient 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 Electronic patient records

Patient Patient portals

Personal health records

Our PHR helps clinicians help patients

Personal records

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 All your notes may be read by a lawyer one day

Data Protection Act 1998: Responding to access requests

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

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

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

[email protected]

Thank you for listening Questions please!