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Dr Mohammad Al-Ubaydli (CEO of Patients Know Best) Dr Al-Ubaydli is author of the book "Personal health records: A guide for clinicians", in which he surveyed the different ways in which patients can work with their clinical team using software. A new generation of tools allows patients to manage their health and Mohammad will cover some of these in his talk, including products by large US companies like Google and Microsoft, as well as the UK software industry. He will also describe the experiences of his own company, Patients Know Best, which integrates its patient-controlled medical records platform into the NHS secure network.
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Home health care & long-term conditions How to succeed with personal health records
The power of choosing who to learn with
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…
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
Roadmap
How to succeed with PHRs
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
Facebook cost < $1 per person to build
Each minute, it sends out the equivalent of one X-ray for each of UK’s 60 million citizens
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
The VA’s experience 25% reduction in bed days of care 20% reduction in numbers of admissions 86% mean satisfaction score rating Population was above national average for:
age, poverty, rural
Source: VA Care Coordination/Home Telehealth Studies 2004-007, in Darkins et al. Telemedicine and e-Health, Dec 2008
The VA’s experience Condition # of Patients % Decrease Utilization
Diabetes 8,954 20.4 Hypertension 7,447 30.3 CHF 4,089 25.9 COPD 1,963 20.7 PTSD 129 45.1 Depression 337 56.4 Other Mental Health 653 40.9 Single Condition 10,885 24.8 Multiple Conditions 6,140 26.0
Roadmap
How to succeed with PHRs
1. Basics: definitions, and why do this at all?
2. Health 2.0 for co-creation
3. Patients Know Best
4. Personal health records’ possibilities
PatientsLikeMe: co-creation
NHS is the platform for co-creation
Doctors and patients must both use a PHR for it to be useful Otherwise: Google Health’s dirty secret
UK has much higher usage than USA GP EHRs: 95% vs 5% Hospital EHRs: 50% vs 20% UK broadband and mobile > UK
NHS brand and N3 network are platforms for trust Trust = co-operation = co-creation
Our platform
Bupa and Great Ormond Street hospital share data with patient (15 NHS hospitals to join)
Detailed explanations for patient save clinician’s time
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
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Roadmap
Doctors want to be paid “I currently help my patients despite my department’s best interest. Problem is there is no telemedicine tariff in NHS, so if patient comes to hospital, we get paid, but if I call patient, we don't get money, so the hospital is disincentivized from investing”
Consultant, Norfolk & Norwich Hospital
Nurses worried about budgets “I know many of our patients will want to use the secure messaging service because they travel from afar and they can self-manage by asking questions. But then we will get fewer clinic appointments and our budget will be cut for helping these patients.”
Specialist nurse, Addenbrooke’s Hospital
My advice: 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
Commissioners already have tools
Lambeth PCT could save £320k if switched 269 young patients with chronic diseases to using online consultations
Top 5 chronic diseases, excluding kidney (because dialysis is disproportionately expensive)
Age less than 50 (to avoid typical but misguided objection that elderly do not use computer)
More than 10 outpatient appointments per annum
We built our software for this Secure web site, already integrated with NHS, available globally
Patient writes message to you
Ticks box for topic: this is what you use for analysis in the future
Thank you for listening
Mohammad Al-Ubaydli Patients Know Best [email protected] www.patientsknowbest.com
