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.

               ...
The banality of good

I like to focus on low-brow tips
rather than high-brow hype

Computer originally seen as barrier
bet...
Roadmap
How to succeed with PHRs
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Fina...
Roadmap
1. Basics: definitions, and why do this at all?
2. Clinical tips
3. Social factors
4. Finances
Some definitions
  Clinicians                                                                     Patient

 Electronic pati...
Some definitions
    Clinicians                                                                    Patient

  Electronic pa...
Some definitions
  Clinicians                                                                             Patient

 Electro...
Some definitions
  Clinicians                                                                                       Patient...
Facebook cost < $1 per person to build




Each minute, it sends out the equivalent of one X-ray for each of UK’s 60 milli...
Some definitions
  Clinicians                                                                               Patient

 Elect...
Some definitions
  Clinicians                                                                      Patient

 Electronic pat...
Why do this at all?
                      There is no other way to cope
                      Aging and obesity mean more ...
The VA’s experience
  25% reduction in bed days of care
  20% reduction in numbers of admissions

  86% mean satisfacti...
The VA’s experience
 Condition             # of Patients   % Decrease Utilization
 Diabetes              8,954
           ...
Roadmap
How to succeed with PHRs
1. Basics: definitions, and why do this at all?

2. Health 2.0 for co-creation
3. Patients...
PatientsLikeMe: co-creation
NHS is the platform for co-creation
    Doctors and patients must both use a PHR for it to
     be useful
       Otherwi...
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...
Assume your writing is read
Your existing notes are already
owned by the patient
See: Data Protection Act and GMC guidelin...
Say sorry and thank you          (early and often)


                    The medical notes are full of errors
            ...
Learn from patients




Online forums by and for patients teach thousands of clinicians already
Ask your specialist nurse ...
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 wheth...
…but make full use of relatives
                    Relatives are wonderfully helpful
                    They often care ...
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
teleme...
Nurses worried about budgets
“I know many of our patients will want to use the
secure messaging service because they trave...
My advice: start asking for payment
                     US payers recognize the value of
                     working onl...
Commissioners already have tools




Lambeth PCT could save £320k if switched 269 young patients with chronic
diseases to ...
We built our software for this
                  Secure web site, already integrated
                  with NHS, available...
Mohammad Al-Ubaydli
        Patients Know Best
        team@patientsknowbest.com
        www.patientsknowbest.com




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

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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

  1. 1. Home health care & long-term conditions How to succeed with personal health records
  2. 2. The power of choosing who to learn with
  3. 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
  4. 4. 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
  5. 5. Roadmap How to succeed with PHRs 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  6. 6. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  7. 7. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records
  8. 8. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Data by clinicians for clinicians
  9. 9. 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.
  10. 10. 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.
  11. 11. 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
  12. 12. 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
  13. 13. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Our PHR helps clinicians help patients
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. PatientsLikeMe: co-creation
  19. 19. 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
  20. 20. Our platform
  21. 21. Bupa and Great Ormond Street hospital share data with patient (15 NHS hospitals to join)
  22. 22. Detailed explanations for patient save clinician’s time
  23. 23. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  24. 24. 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
  25. 25. 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).
  26. 26. 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
  27. 27. 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
  28. 28. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  29. 29. 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
  30. 30. …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
  31. 31. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  32. 32. 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
  33. 33. 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
  34. 34. 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
  35. 35. 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
  36. 36. 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
  37. 37. Mohammad Al-Ubaydli Patients Know Best team@patientsknowbest.com www.patientsknowbest.com Thank you for listening
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