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Patient-controlled records | Dr Mohammad Al-Ubaydli
 

Patient-controlled records | Dr Mohammad Al-Ubaydli

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Presentation at the Diagnosis Salon on 28th April at the Royal Society of Medicine (RSM) by Dr Mohammad Al-Ubaydli on Patient controlled records

Presentation at the Diagnosis Salon on 28th April at the Royal Society of Medicine (RSM) by Dr Mohammad Al-Ubaydli on Patient controlled records

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    Patient-controlled records | Dr Mohammad Al-Ubaydli Patient-controlled records | Dr Mohammad Al-Ubaydli Presentation Transcript

    • Patient-controlled records Dr Mohammad Al-Ubaydli
    • Women’s suffrage over time Source: http://en.wikipedia.org/wiki/Timeline_of_womens_suffrage
    • Women’s suffrage over time Professionals objecting to patient control are like Swiss men objecting to women voting in 1971: wealthy, civilized, eloquent… and on the wrong side of history
    • 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
    • Our customersUse our platform to save moneyfrom shared workflow1. Thalidomide Trust / Imperial Collegehospital wanted us for online consultations2. Great Ormond Street hospital wanted usfor home health care electronic prescribing3. More clinicians joining every day aspatients invite them to We can do what Microsoft, Google and the NHS cannot do
    • PKB is the only option for patient-controlled medical recordsWe will put patients in charge of making decisions about theircare, including control of their health recordsThe Coalition:our programme for government, Cabinet Office, 2010.http://programmeforgovernment.hmg.gov.uk/nhs
    • GP surgeries and privateclinics conduct onlineconsultations
    • Great Ormond Street Hospital and home healthcare providers
    • Detailed explanationsfor patient saveclinician’s time
    • Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Tomorrow: embracing possibilities
    • 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 recordsData by cliniciansfor 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.
    • 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
    • Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Tomorrow: embracing possibilities
    • 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
    • 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
    • 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
    • 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 But even patients with common diseases have unique combinations of diseases and circumstances Every patient is unique
    • Roadmap1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions3. Tomorrow: embracing possibilities
    • Patients with HIV publishing all notes
    • Patients use (much) better tools than you
    • Patients use (much) better tools than you
    • Patients have better genetics tools than 99% of clinicians do (or ever will)
    • Patients will collect data you never knew
    • 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
    • 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
    • Mohammad Al-Ubaydli Patients Know Best team@patientsknowbest.com www.patientsknowbest.comThank you for listening