Patient-controlled records. Dr Mohammad Al-Ubaydli

Transcription

1 Patient-controlled records Dr Mohammad Al-Ubaydli

2 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

3 Our customers Use our platform to save money from shared workflow 1. Thalidomide Trust wanted us for online consultations across Europe 2. Great Ormond Street hospital wanted us for home health care electronic prescribing 3. Next year, 15 more NHS hospitals join We can do what Microsoft, Google and the NHS cannot do

4 PKB is the only option for patientcontrolled medical records We will put patients in charge of making decisions about their care, including control of their health records The Coalition:our programme for government, Cabinet Office,

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11 GP surgeries and private clinics conduct online consultations

12 Great Ormond Street Hospital and home health care providers

13 Detailed explanations for patient save clinician s time

14 Roadmap 1. Basics: definitions, and why do this at all? 2. Today: letting go of assumptions 3. Tomorrow: embracing possibilities 4. Future: a single record?

15 Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records

16 Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Data by clinicians for clinicians

17 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.

18 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 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.

19 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

20 Roadmap 1. Basics: definitions, and why do this at all? 2. Today: letting go of assumptions 3. Tomorrow: embracing possibilities 4. Future: a single record?

21 Patient-held records already here Some parts of some health systems have already had them In continental Europe and much of developing world, this is the norm UK private health care, and US fragmented care, patients end up doing this anyway NHS maternal notes and child personal health record use the patient to cross silos Distribution is arbitrary, but users assume otherwise

22 Conflict is gone Discomfort clinicians feel is due to limitations of paper Piece of paper cannot be in two places at the same time Transporting paper takes time and money Clinicians do not feel safe unless they hold the only copy of the paper Digital records eliminate the conflict

23 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

24 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

25 Roadmap 1. Basics: definitions, and why do this at all? 2. Today: letting go of assumptions 3. Tomorrow: embracing possibilities 4. Future: a single record?

26 Patients with HIV publishing all notes

27 Patients use (much) better tools than you

28 Patients use (much) better tools than you

29 Patients have better genetics tools than 99% of clinicians do (or ever will)

30 Patients will collect data you never knew

31 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, 2010, John Wiley & Sons

32 Roadmap 1. Basics: definitions, and why do this at all? 2. Today: letting go of assumptions 3. Tomorrow: embracing possibilities 4. Future: a single record?

33 No Single record is unlikely and undesirable No other industry (e.g. banking, retail, travel) has managed to have a single record, so why does health care expect to do so even as it lags behind in computerization? LOCKSS (Lots of Copies Keep Stuff Safe) If single copy, it must be controlled by patient, and few clinicians would agree to this But multiple records are not a problem

34 But if you really really want it The medical records must change from blogs to wikis Blogs and current medical records are series of postings organized in reverse chronological order: good for someone monitoring constantly, poor for someone learning quickly Wikis and future medical records: show current consensus, with version tracking of who contributed what, when The wiki displays the consensus about each patient

35 Mohammad Al-Ubaydli Patients Know Best Thank you for listening