encouraging empowerment through patient-held records

8/9/2019 Encouraging Empowerment Through Patient-held Records

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Encouraging empowermentthrough patient-held records



We will put patients in charge of making decisions aboutcare, including control of their health records

The Coalition:our programme for government , Cabinet Office, 2010.

http://programmeforgovernment.hmg.gov.uk/nhs

PKB is the only option for patient-controlled medical records



Trained as physician at theUniversity of Cambridge.

Trained as programmer and

worked as NIH Staff Scienti

Honourary Senior ResearchAssociate, UCL Medical Sch

Continuing research on PHR2,700 US hospitals, new bo2010: book.patientsknowb

A bit about me…



Our customers

Use our platform to save moneyfrom shared workflow

1. Ramsey Health Centre and LondonMedical wanted us for online consultations

2. Bupa and Great Ormond Street hospitalwanted us for electronic prescribing

3. Next year, 15 more NHS hospitals join

We can do what Microsoft,

Google and the NHS cannot do



1. Basics: definitions, and why do this at all?2. Today: letting go of assumptions

3. Tomorrow: embracing possibilities

4. Future: a single record?

Roadmap



Some definitions

Patient portals

Clinicians

Electronic patient records Personal health records Personal record

Patie



Some definitions

Patient portals

Clinicians


Patie

Data by cliniciansfor clinicians



Some definitions

Patient portals

Clinicians


Patie

Easing the patient’s burden

Scheduling appointments

Ordering medication refills

Secure messaging

Access to the EPR

See: Pyer et. al 2004, Ralston et. a



Some definitions

Patient portals

Clinicians


Patie

NHSmail users have mailbox shrunk 06 Feb 2008

NHS staff who use the health service’s email service NHSmail have been infoafter a recent move to Microsoft Exchange their mailbox size has been cappe

Some 80% of NHS accounts have been capped at just 200M

appears miserly compared with the hefty 6Gb offered by Gmail for fthe 5Gb offered for free on Windows Live Hotmail.

Data by patient forPowerful but unstru



Some definitions

Patient portals

Clinicians


Patie

Markle Foundation’s ideal PHR

Access controlled by patient

Lifelong records

Information from all

Universal access

Private and secure

TransparentEasy exchange

See: Connecting for Hea



Roadmap

1. Basics: definitions, and why do this at all?

2. Today: letting go of assumptions





Patient-held records already he

Some parts of some health systems have already had the

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



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



Patient-controlled records aweso

This is the only way to bridge the silos

Within “integrated” systems like NHS and Kaiser Permanente, clinicians do not talk toother across community and hospitals

Within single institution e.g. hospital, clinicians do not talk to each other across depa

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

Th l h t t



The only person who turns up to athe appointments: the patient

So give them a copy of all of their data: they will teach everyone else in the clini

GP

A&E

Inpatient



Patients should manage their clinicia

Unique patients require truly patient-centred care

In a rare chronic disease, the patient knows more than most of the clinicians they mee

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 andcircumstances

Every patient is unique



Roadmap






Patients with HIV publishing all no



Patients use (much) better tools than



Patients use (much) better tools than

Patients have better genetics tools th



Patients have better genetics tools th99% of clinicians do (or ever will



Patients will collect data you never k



Patients will collect data you never k

Useful web sites

Patients Like Me for HIV: patientslikeme.com

23andMe for genetic sequencing: 23andme

RelifeInSite for pain documentation: reliefins

Lifepsychol for monitor quality of life: lifepsy

Personal health records: A guide Al-Ubaydli, 2010, John W

http://book.patientsk



Roadmap






No

Single record is unlikely and undesirableNo other industry (e.g. banking, retail, travel) has managed to have a single record, 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



But if you really really want it…

The medical records must change from blogs to wikisBlogs and current medical records are series of postings organized in reverse chronolorder: good for someone monitoring constantly, poor for someone learning quickly

Wikis and future medical records: show current consensus, with version tracking of w

contributed what, when

The wiki displays the consensus about each patient



Thank you for listening

Mohammad Al-UbaydliPatients Know [email protected]

encouraging empowerment through patient-held records

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