Patient-controlled records. Dr Mohammad Al-Ubaydli

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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

Honourary Senior Research Associate, UCL Medical School.

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

Great Ormond Street hospital wanted us for home health care electronic

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,

control of their health records The Coalition:our programme for

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? 5. Questions for the EHR workshop

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.

patient s burden Scheduling appointments Ordering medication refills

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.

have been informed that after a recent move to Microsoft Exchange their mailbox size has been capped.

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

PHR: Access controlled by patient Lifelong records Information from all

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? 5. Questions for the EHR workshop

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? 5. Questions for the EHR workshop

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? 5. Questions for the EHR workshop

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 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? 5. Questions for the EHR workshop

36 System architecture Build for international consumer PKB integrated into NHS network to bootstrap the process of trust Translations and mappings built over time when demonstrate utility Use standards that consumer companies use, not those of government-supported cartels Ultimately (not yet) patient will be responsible for data integrity

37 Information architecture Gradually build up the record Started with unstructured communication (secure messages, Word docs, scanned letters) This builds the case for structured data to be released by clinicians to patients Patients begin to submit data that has never before been stored in clinical records Ultimately, only the patient will have the complete record, so clinicians will have to use the patient s record

38 Semantics Consumer companies know how to teach semantics Look at Facebook allowing tagging of photographs Be forgiving and accept unstructured data in the beginning Allow groups to gradually structure the data Social networks demonstrate the value of semantics

39 Security Assert and enforce the patient s control Encryption at the patient level is only acceptable method of mass data storage Strong authentication at registration Nomination by the patient of someone else to manage the record This privacy framework unlocks the cost savings of sharing

40 Strategy Patients need to be encouraged by their doctors Enthusiastic patients who operated alone wasted their time Most patients need a support signal from at least one clinician Only then will patients feel brave enough to take control Patients can then encourage their doctors

41 Communication and change management Before massive change, must carefully explain that there will be no change Begin with simple useful acts of change, e.g. online secure messaging Add features and changes only as earn the right to do so Software must improve the skills of the patients to be part of the clinical team Ultimately, patients will manage clinicians

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

Networked Personal Health Records

Networked Personal Health Records Table of Contents Potential of Personal Health Records (PHRs) What is a PHR? Common functions of a PHR Ideal attributes The PHR environment Consumer perceptions about