the challenges and benefits of implementing and using personal health and care records

THE CHALLENGES AND BENEFITS OF IMPLEMENTING AND USING

PERSONAL HEALTH AND CARE RECORDS

A SUPPLIER / CLINICAL LEADER / PATIENT’S PERSPECTIVE

Pharmaceuticals

Pharmacies

Secondary care/Hospital Community teams

Employers

Relatives

GP

Charities & Patient Advocacy Groups

Government & Commissioning bodies

Researchers

Social services

Mobile device and app developers

Patient

Primary care services

Specialist services

THE PROBLEM – SPECIALISATION CREATES FRAGMENTATION

• Difficult to connect different sources of information, due to technical and legal reasons

• Patient excluded from their information, but tries to tell everyone what is happening

• No-one feels in control

Hospital services

GP

Current ways to empower the patient gives them access to lots of information in lots of places, e.g. patient access to GP information or hospital information on a patient portal.Fundamentally flawed:• The patient doesn’t own the data• Often read-only• Tied to an organisation or a software provider• Multiple sites, multiple logins• Patient can’t share information with anyone

else• They are not portable

TRADITIONAL PATIENT PORTALS – CREATE EVEN MORE FRAGMENTATION

Apps and devices

Pharmaceuticals

Pharmacies

Secondary care/hospitals

Primary care health services

Employers

Relatives

GP


Government & Commissioning bodies Researchers


Community teams

Specialist services

Social services

THE SOLUTION – INTEGRATING ON THE PATIENT

DIGITAL STRATEGY IS WRONGBECAUSE IT IGNORES THE PATIENT

Wor

kflow

Data

Professional Economy Citizen

Wor

kflow

Data

EHR


Electronic health records: workflow for professionals to document their work…critical to getting paid for their work

Wor

kflow

Data

EHR


Patient portal

Patient portal: add-on to EHR for professionals to work with patients…but this ties patient to institutionrather than tying institution to patient

Wor

kflow

Data

EHR


Patient portal

PHR

Personal health record: workflow for patients to document their work…but not used by professionalso not useful to patient

Wor

kflow

Data

EHR


Patient portal

PHR

IDCR

Integrated Digital Care Record: single repository of all data about the patient….but patient is locked outwhile patient should be only one in

Wor

kflow

Data

EHR


Patient portal

PHR

IDCR

HIE

Health information exchange: workflow to transfer data about patient….but traditional HIEs don’t have patient consent so don’t have mandate

Wor

kflow

Data

EHR


Patient portal

PHR

IDCR

HIE

Many digital strategies incorrectly separated these technologies

Wor

kflow

Data


Patient portal

PHR

IDCR

HIE

EHR

Many digital strategies incorrectly joined up these technologies by focusing on the professional’s interest

Wor

kflow

Data


Patient portal

PHR

IDCR

HIE

EHR

Many digital strategies incorrectly let professional’s interest drive the community’s interest leaving out the patient

Wor

kflow

Data

EHR


Patient portal

PHR

IDCR

HIE

The patient’s interest should be driverThe patient should be in control

Wor

kflow

Data

EHR


Pharmaceuticals

Pharmacies

Secondary care/hospitals

Primary care health services

Employers

Relatives

GP


Government & Commissioning bodies

Researchers


Community teams

Specialist services

Social services

HOW DOES A PATIENT-CONTROLLED RECORD HELP

EVERYBODY?

1.COORDINATED CARE

SECURE SINGLE INTEGRATED DIGITAL CARE RECORD (IDCR)

• Held and controlled by the patient, all medical and care planning information is consolidated in one record and available to everyone in the person’s health network, including pharmacies, GPs, social services, acute hospitals, specialist centres and charities.

• Available on any device connected to the internet with no software installation• The best and only scalable way of doing truly integrated digital care record (IDCR)

projects• Can be the whole vertical stack from IDCR data storage patient portal personal

health record or sit on top of clinician-facing IDCR with PKB’s consent layer driving permissions

CONSENT ENGINE

• Granular consent to share information across services driven by the patient

• Can segment record to share certain types of information, e.g. general, mental, sexual and social care datasets

• Also contains permissions – allows preferences to be provided (communication) and secondary usage of data

• All consent information available via API to inform other systems upstream e.g the GP should not share sexual heath information with a specific service

• Legally auditable ‘break glass’ functionality for emergency access

W H AT C A N B E AC H I V E D W I T H A PAT I E N T- CO N T R O L L E D R E CO R D ?2. COMMUNICATION

FEATURES:• A patient portal with a

vast array of extra functionality

• Message people in your network to get the right help, quickly

• Conduct online video consultations and have all the information to hand

• Send appointments, letters, reports, surveys, questionnaires and assessments remotely (e.g. Friends and Family Test)

COMMUNICATION

BENEFITS:• Deliver on patient

portal/patient access to records programmes

• Go paperless with the patient and save postal costs (on average £1.00 per letter)

• Conduct virtual clinics and improve throughput

• Improve clinical diagnosis

• Push follow-up care to remote appointments and see more new patients in clinic

3. MANAGING CARE

SYMPTOM TRACKERS, MEASUREMENTS AND RESULTS

FEATURES:• Lab results and

information direct to the patient from all connected sources with full medico-legal audit trail

• Monitor symptoms at home, take measurements and share

• Track medication compliance

BENEFITS:• Reduced burden on

telephone service or follow-up appointments to send and discuss results

• Removes unnecessary duplication of tests

• Prevent unplanned admissions through early identification of problems

• Medication reconciliation increase patient safety and reduces adverse events

TELEHEALTH, SOFTWARE/APP AND DEVICE CONNECTIVITY

FEATURES:• Over 100+ consumer and

medical devices connected

• Digital ecosystem through open APIs integrating a wide range apps and software, from decision support, health coaching and condition specific apps

BENEFITS:• Cost effective at home

monitoring, e.g. cheaper to provide blood pressure cuff then some someone to take reading

• Supports junior staff leading patient care

• Increase engagement with patients through device connectivity

• Create a future-proof and scalable solution through a marketplace of apps that support every patient

4. CARE PLANNING

SHARED CARE PLANNING

FEATURES:• Complete assessments and

reviews remotely• Update care plans remotely

and collaboratively, e.g. change medication regimes

• Embed video, podcast, webpages or other multimedia information resources

• Capture national datasets, PROMS and PREMS from multiple stakeholders

• Ability to create patient registries

BENEFITS:• The only way to do shared

care planning where each stakeholder can contribute

• Supported self-management reduces unplanned admissions and service burden

• Promotes patient engagement and whole system support

• Coordinated care removes duplication

• Reduce manual entry of patient registries

• Provide cross-boundary care

4CONTINENTS THAT PKB IS BEING USED ACROSS

9 COUNTRIES USING PKB…AND GROWING

15

WORKFLOW TOOLS FOR PATIENTS AND PROFESSIONALS

19

100

DEVICES AND APPS INTEGRATED WITH PKB

2,300,000LARGEST POPULATION COVERAGE WILL BE IN A SINGLE DEPLOYMENT

200PAYING SITES USING PKB IN 2015

Messaging, care planning, surveys, web video, symptom tracking, resource library, appointments, home monitoring, medications…

English, Dutch, Polish, French, German, Arabic, Chinese, Russian, Welsh, Spanish, Hindi, Gujurati, Greek, Swedish, Portugese, Tamil, Urdu, Turkish, Bengali

LANGUAGES TRANSLATED + +

+

350YEAR-ON-YEAR

2015 GROWTH

%

500,000BIRTHS PLANNED FOR MATERNITY APP IN 2016

xy

GROWTH OF PKB ADOPTION AND USAGE

1RANKED IN WORLD FOR PATIENT ACCESS TO MEDICAL RECORDSRANKED IN EUROPE FOR eHEALTH 2015

#

17

NHS INNOVATION ACCELERATOR

PKB one of 17 NIA Fellows in programme to take innovation to scale in NHS

“ ”

THANK YOU

I really like this service... having a way of interacting with clinicians that mirrors how people use online facilities is brilliant

ABOUT PATIENTS KNOW BEST

SECURE AND SAFE• All information stored on the secure NHS N3

network in the UK, or in-country servers in other territories

• Can be used in any secure environment in any country

• Overcomes liability and data protection as the patient is sharing their copy of their information

• Information encrypted in transit and storage

• Unique private key encryption, so only the people the patient trusts can see the information

• Full medico-legal audit trail

• ISO 27001 compliant in the UK HIPAA in the USA

ACCESSIBLE AND INCLUSIVE

Translated into 19 languages and can be changed between versions instantly

• Cloud-based - No installation required or infrastructure• Designed for simplicity of use• Access information offline• Dedicated smartphone app• Compatible with all browsers

OUR DEPLOYMENTS

80+ live sites across the UKOver 200 sites live by Q2 2016• Hospitals• CCGs• Mental health• Community services• Local Authorities (social services)• Prison and probation services• Charities• Specialist centres• Device manufacturers• Pharmaceuticals• Software providers

9 Countries worldwide

PKB IS A SOCIAL ENTERPRISE

Patients Know Best is our mission statement. We achieve this by each person:1. Owning a copy of all health information about them2. Understanding what this information means3. Using this understanding to make a shared decision with family and professionalsThe person owns all health data in his or her PKB account. Control over access to the data is legally enforced through this ownership and technically enforced through encryption. No one can decrypt these health data without the permission of the person.

CIE / PKB DEMONSTRATION

Patient Bertie Bulldog logs in to see full record

Discussions page shows all encounters and privacy labels

Diagnosis page shows all conditions and privacy labels

Laboratory page shows all test results

And each test result…

…has privacy labels for each valueThe source of a test result is more private than the test result is, e.g. a full blood count ordered by a GP vs a GUM clinic.

Hospital pre-configures which specialties assign their data to which privacy labels for test results transferred automatically via HL7 API.

Patient can change individual test result valuesPKB will eventually allow a patient to classify all test results (e.g. all CD4 counts) as private regardless or who ordered them (e.g. GP vs GUM clinic).

Patient can see which teams have access to which privacy labels

Professional logging in can see data based on privacy label permissions

If patient changes permissions...

...changes what team sees

COMPARISON OF SHARING

HOW A PROFESSIONAL CAN GAIN ACCESS TO THE RECORD

NWL professional without access to patient’s record

Professional can get explicit consent...Click “Ask for access”

...or document existing implicit consent...Click “Ask for access”

...or break the glassClick “Ask for access”

The implicit consent process allows documenting and proceeding to accessNo need to wait for patient permission, just legal audit trail and notification for patient of what happened.

the challenges and benefits of implementing and using personal health and care records

Healthcare