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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
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
Home health care & long-term conditions: How to succeed with personal health records
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
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.
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
  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
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
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
Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors

4. Finances
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
Mohammad Al-Ubaydli
        Patients Know Best
        team@patientsknowbest.com
        www.patientsknowbest.com




Thank you for listening

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Home health care & long-term conditions: How to succeed with personal health records

  • 1. Home health care & long-term conditions How to succeed with personal health records
  • 2. The power of choosing who to learn with
  • 3. 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
  • 5. 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
  • 6. Roadmap How to succeed with PHRs 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  • 7. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  • 8. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records
  • 9. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Data by clinicians for clinicians
  • 10. 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.
  • 11. 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.
  • 12. 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
  • 13. 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
  • 14. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Our PHR helps clinicians help patients
  • 15. 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
  • 16. 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
  • 17. 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
  • 18. 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
  • 20. 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
  • 22. Bupa and Great Ormond Street hospital share data with patient (15 NHS hospitals to join)
  • 23. Detailed explanations for patient save clinician’s time
  • 24. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  • 25. 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
  • 26. 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).
  • 27. 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
  • 28. 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
  • 29. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  • 30. 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
  • 31. …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
  • 32. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  • 33. 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
  • 34. 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
  • 35. 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
  • 36. 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
  • 37. 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
  • 38. Mohammad Al-Ubaydli Patients Know Best team@patientsknowbest.com www.patientsknowbest.com Thank you for listening