Giving Patients Control of their Health Records

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Copyright, Mohammad Al-Ubaydli, Patients Know Best, 2011

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Giving Patients Control of their Health Records

  1. 1. Giving patients controlof their health records Dr Mohammad Al-Ubaydli
  2. 2. Patient is kingMost do not know this yetThis is beyond commerce (although thecustomer certainly ought to be king)It is because of specialization: the powerof modern medicine is also thepowerlessness of professionalsOnly the patient has enough informationto co-ordinate care across specialistsPatient will only becomemore important
  3. 3. Give patient their record so they can manage health care (system)“Patient control of records couldbe considered the equivalent ofletting council house tenants buytheir houses – not only did it givethem assets that they could benefitfrom the assets benefited from thecare of the owners”Young Foundation describingimpact of Patients Know BestConnect: Patients and the Powerof Data. See: http://bit.ly/dEQwkj
  4. 4. 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. 5. Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Successes: case studies4. Tomorrow: embracing possibilities
  6. 6. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records
  7. 7. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal recordsData by cliniciansfor clinicians
  8. 8. 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.
  9. 9. 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.
  10. 10. 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
  11. 11. Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Successes: case studies4. Tomorrow: embracing possibilities
  12. 12. Patient-held records already hereSome parts of some health systems have already had themIn continental Europe and much of developing world, this is the normUK private health care, and US fragmented care, patients end up doing this anywayNHS maternal notes and child personal health record use the patient to cross silosDistribution is arbitrary, but users assume otherwise
  13. 13. Conflict is goneDiscomfort clinicians feel is due to limitations of paperPiece of paper cannot be in two places at the same timeTransporting paper takes time and moneyClinicians do not feel safe unless they hold the only copy of the paperDigital records eliminate the conflict
  14. 14. Patient-controlled records awesome This is the only way to bridge the silos Within “integrated” systems like NHS and Kaiser Permanente, clinicians do not talk to each other across community and hospitals Within single institution e.g. hospital, clinicians do not talk to each other across departments Within same department, clinicians do not talk to each other across specialities The patient is the only person who turns up to all the appointments, so give them the records
  15. 15. Patients should manage their clinicians Unique patients require truly patient-centred care In a rare chronic disease, the patient knows more than most of the clinicians they meet There are 30 million people with rare diseases in Western Europe and the USA (GCC will have higher rates from cousin marriages) But even patients with common diseases have unique combinations of diseases and circumstances Every patient is unique
  16. 16. Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Successes: case studies4. Tomorrow: embracing possibilities
  17. 17. Our customersUse our platform to save moneyfrom shared workflow1. Great Ormond Street hospital wantedhome health care electronic prescribing2. UCL Hospital wanted personal healthplans with asthma patients3. Novartis wanted research on COPD We can do what Microsoft, Google and the NHS cannot do
  18. 18. Conduct onlineconsultationswhich are seenby all cliniciansin team
  19. 19. Great Ormond Street Hospital and home healthcare providers
  20. 20. Detailed explanationsfor patient saveclinician’s time
  21. 21. Personal health plansTeach patient to teach team
  22. 22. Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Successes: case studies4. Tomorrow: embracing possibilities
  23. 23. Patients with HIV publishing all notes
  24. 24. Patients use (much) better tools than clinicians
  25. 25. Patients use (much) better tools than you
  26. 26. Patients have better genetics tools than 99% of clinicians do (or ever will)
  27. 27. Patients will collect data you never knew
  28. 28. Patients will collect data you never knew Useful web sites Patients Like Me for HIV: patientslikeme.com 23andMe for genetic sequencing: 23andme.com RelifeInSite for pain documentation: reliefinsite.com Lifepsychol for monitor quality of life: lifepsychol.com Personal health records: A guide for clinicians Al-Ubaydli, 2011, John Wiley & Sons http://book.patientsknowbest.com
  29. 29. Patient-reported outcomes / observations / informationPatient-controlled records as a research toolPatient-reported outcomes on each consultationPatient-reported observations on data that had never previously been collected in medical recordsPatient-reported information through sentiment analysis of diaries
  30. 30. Mohammad Al-Ubaydli Patients Know Best team@patientsknowbest.com www.patientsknowbest.comThank you for listening

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