Guardian Angel(1994 proposal--let’s try again!)

life-long personal

active health

information system

Rationale

• Cost and quality are biggest issues in health care • Market forces already target providers and payers • Largest point of leverage is patient’s involvement

in his/her own care

Mark Dimalanta ©San Jose Mercury News

C. Everett Koop

Benefits• Making the patient an active participant can

lead to improved quality of care, greater satisfaction, and decreased cost – early detection of disease – continuous monitoring of care – patient participation in data collection and

decision making – built-in customized patient education

Desired Functionality• Patient-owned life-long individual record: all

medical conditions, care, preferences, …; allows individual to collect data on own medically-relevant experiences

• Personal interface to health-care information systems: hospital, lab, clinic, billing, …

• Individualized medical encyclopedia: explains results and plans to patient

• Communication interface with care team • Permit unobtrusive continuous monitoring of

relevant health-related activities and conditions • Decision support for the patient and caretakers

Focus Point for Individual Medical Data

patient 1patient 2patient 3

…patient n

hospital

hospital 1clinic 2

doc’s offc…

comm org

patientvs.

■ Patient has most complete picture ■ Patient controls access

The Personal(ly Controlled) Health Record

PHR

Hospital

Doc

Lab

Pharmacy

...

Research

Public Health

Policy

Oversight

...

Lifestyle

Nutrition

“Smarts”

• Sanity checks on data, diagnoses and plans • Monitor progress of medical conditions

– compare effects of therapy to expectations – look out for side-effects

• Explain significance of data and plans • Customize encyclopedic knowledge to the

individual’s condition and teach it • Encourage appropriate communications • Keep up to date with genomic advances

Personalized Decision Support

• Engage the patient (and/or family) as part of the care team• Always there, making observations• Cares most• Reflects preferences• Works for free

• Educate patient about his/her condition• Home medical encyclopedia

• Merck Manual, Mayo Family Health, American Diabetes Assn, MedlinePlus• Follow-up for encounters; e.g., Children’s Hosp. Boston ED experiments

• Determine what decisions can be “titrated”, provide health advisor• E.g., diuretics based on ankle swelling

• Predictive modeling• E.g., blood sugar in diabetes, as function of diet, exercise, insulin• May lead to refined, personalized dynamic treatment

• Unobtrusive monitoring (weight, blood pressure, blood sugar, movement, ...)

Guardian Angel http://ga.org

PCHR Principles

• Public Standards• required for interoperability; e.g., HL7, DICOM, CCR, ... HITSP & successors

• Patient Control• authentication, authorization, auditing

• "On the Internet, nobody knows that you are a dog."• Desiderata

• Comprehensiveness• Accessibility• Interoperability• Confidentiality• Accountability• Flexibility

K. D. Mandl, P. Szolovits, and I. S. Kohane. Public standards and patients’ control: how to keep electronic medical records accessible but private. BMJ, 322(7281):283–287, 2001 Feb 3.

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Project Foci

■ Doctor/patient communication ■ Web-based delivery of patient education curriculum ■ Diabetes ■ Management of chronic heart disease ■ Hypercholesterolemia ■ High-risk pregnancy/gestational diabetes ■ Post-partum care of mother and infant

Gestational Diabetes

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Education and Training

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Post-Partum Guardian Angel

• Care for mother and infant in first few months of life

• Support, education • Communication

– Pediatrician – Obstetrician – Social Services

• Data collection

➽Experimental test of the Guardian Angel idea

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Control of data entry

Patient-side of HealthConnect

(clinical grade patient-physician communication) www.HealthConnect.org

Provider Screen-- Choose Plan

Provider Screen:

Edit Plan

Initial Results■ 6 week pilot (1999)

– 3,941 patients registered – 52 doctors discharged nearly 1000

eligible patients – 201 patient log-ins – 47 patient messages

■ One Anecdote

Communication

• Many studies show 75-85% of clinicians’ time spent in communication• Enrico Coiera (NSW, Australia) has pioneered this work

• e.g., 2004 ED study: 42 comm. events/hr, 15 of which were interruptions• R. Spencer, et al., Variation in communication loads on clinical staff in the emergency department. Ann Intern Med 44:268-273, 2004.

• In systems building, pay attention to communications

• Focused communication to patients can affect behavior, outcomes• Voice-response calls work to enhance chronic disease management, health

behavior, caregiver support• R. H. Friedman, et al., The virtual visit: using telecommunications technology to take care of patients. JAMIA 4:6:413-425, 1997.

• E.g., medication adherence among elderly hypertensives can be improved: +18% from baseline self-reported adherence, -5.2 mm Hg diastolic BP drop

• R. H. Friedman, Automated Telephone Conversations to Assess Health Behavior and Deliver Behavioral Interventions. J Med Systems 22:95-102, 1997.

• Simple uses• Scheduling• Prescription refills• Nursing desk for questions, reassurance, ...

PCHR Challenges

• Persistence of electronic data• my old Powerpoint files can’t be opened

• Encouraging/requiring flows of information• commercial pressure has been toward closed, proprietary systems

• Duplicate (or worse) record keeping• institutions will insist on their own records, not trusting the patient’s

• cryptographic signatures are a technical, but not social solution• adversarial (litigious) relationships

• Getting data into (usable) electronic form is hard• time consuming, with no immediate reward to those who spend the time• most data generated by clinicians, therefore EHR must be “solved” first

• Slow adoption• healthy people don’t (think they) need medical records• experience with Dossia/Indivo, Google Health, Microsoft Health Vault, tethered

systems

• They can be mis-used or lost/stolen!

• “DR. DEBORAH PEEL: Well, any time there's easy access to electronic records, we get both benefits and tremendous risks. So some of the big risks are, how secure are the systems? In other words, how easy is it to break into the systems for people to steal information or lose it on a laptop? So security is a big issue both for the military and for all of the rest of us.

• The other issue is, who controls access to records? For over 200 years in this nation, it's been you, the patient, making the decision who sees your record.” (PBS NewsHour)

• Extreme concerns • “every American's "health information" is to be computerized by 2014.  Health information is

anything to do with "the past, present, or future physical or mental health or condition of an individual."”

• “Creating these computerized records will require a vast assortment of laboring oars, all of which will have access to our electronic health information records”

• “freely sold”

• “open season on our private information” via government oversight

• Records can be wrong!Technology Challenges

• How to maintain a “running” process over a human lifetime, across changing hardware and software environments

• Standards and mediators to overcome the “tower of Babel” of different record-keeping and processing systems across the health-care field

• Adequate formalization of medical knowledge to provide intelligent assistance for interpretation and education

• Unobtrusive, non-invasive sensors that track physical activity, risky behavior, aspects of physiological state

New Opportunities

• Time of change is time of opportunity • Traditional hospital systems look like dinosaurs

– “stovepipes” – indirect use

• Future systems will be based on – networking – Web – direct user interaction – integration of sensors and other media – “continuous” interpretation of data

CHB and PCHRs

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NIH & CDC funded

Slides from Ben Adida, Children’s

Promise of PCHRs

• Principle: it’s your data

• Better: harder to lose data

• More Efficient: don’t repeat tests

• Break the EMR Silo: data flows

• New Models of Care

• Facilitating Clinical Resarch

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“We cannot overstate how important PHRs are to the efficient functioning of a low-cost, high quality health-care system . . . .

We think that the INDIVO system, or something like it is a good place to start.”

Clayton Christensen Harvard Business School

Today’s Indivo X (from Ben Adida)

• A PCHR platform to make developing personal health apps easier• Aggregation• Management of sharing• Reporting pipeline• Extensible API• Visual extensibility• Login, authentication, and storage• Consent management

• Licensed under broad, easily available terms• encourage innovation,

both commercial and non-commercial• build a sharing community• GPLv3 for core Indivo• LGPLv3 for client libraries• PHAs can be licensed as you prefer

http://indivohealth.org

Alice

PCHRfor Alice

Aggregation Sharing Management

Alice

PCHRfor Alice

Lab Results

Allergies

Meds "I only take

50mg"

Specialist

School Nurse

Reporting Pipeline

Vaccine

Indivo X

Vaccine

Indivo X

Vaccine

Indivo X

Vaccine

Indivo X

Vaccine

Indivo X

Allergy

Indivo X

Allergy

Indivo 3.1

Google

CCR

Vaccine

Indivo X

Allergy

Allergy

Allergy

Immunization

Procedure

Procedure

Equipment

Vitals

Lab

Vaccine

API for extensibility

...

Indivo API

Indivo API

Indivo API

Indivo API

Medical Survey Engine Indivo API

Indivo X

New ResearchNotifier

Blood PressureMonitoring Service

Genomic Research

API for extensibility

Screen Real-Estatecontrolled by PHA

login and storage

Alice'sIndivo X Blood Pressure

Monitoring Service

Alice

sharing and consent management

Applications [X] Blood Pressure Monitoring Service

[X] Family Medical History

[X] Diabetes Journal

Consents

[X] Gene Partnership Project study

[X] Adolescent Medicine study

[X] Gene Partnership Project study

The Facebook Lesson

• started with many built-in features

• introduced application platform

• reduced built-in features, replaced by better third-party apps

• The best app ideas will come from places we don’t expect.

• These apps need a solid core toease development, provide a unified user experience, and maintain a high privacy standard.

PCHR Challenges

• Little uptake on Google Health, Microsoft Healthvault, Dossia, ...• Better usage of myHealthEVet, PatientSite, etc. — WHY? • How does data get into the PCHR?• How does data get from the PCHR to the care provider?• Workflow, workflow, workflow, ...

• Proposal to my doctor:“I’ll share the most complete version of my medical records with you if you promise to update them with what you learn about me!”

• No EMR’s currently support this proposal

W3-EMRS Experience (’94-7)

• Virtual assembly of longitudinal record from wherever a patient has records – Web-based 3-tier architecture – Local site-servers to interface with legacy systems – HL7 communication – SSL & crypto token security – Policy-based authentication & authorization – ER application

W3-EMRS ArchitectureUser

AgglutinatorMaster Patient

Index

Legacy EMRSLegacy EMRS

Site Server Site ServerHTTP-Srv

SSL HL7/CMR

HTML

HTTP-Srv

HTTP-Srv

…

W3-EMRS Content

• Demographics • Problem list • Allergies • Medications • Labs and clinical measurements • Visit history • Notes and discharge summaries • Radiology & other reports (+ images) • Immunizations

A Common Patient

Problems Medications

Visit History W3-EMRS “Success”

• Demonstrated on sample data (from three different hospitals)

• Published – Technology – Confidentiality Policy

• Discarded

Successful use within merged institutions

Google Health• introduced in 2008 and discontinued in 2011 • users to volunteer their health records – either manually or by logging

into their accounts at partnered health services providers – into the Google Health system, thereby merging potentially separate health records into one centralized Google Health profile

• include "health conditions, medications, allergies, and lab results” • provide the user with a merged health record, information on conditions,

and possible interactions between drugs, conditions, and allergies • Google Health's API was based on a subset of the Continuity of Care

Record • earlier two-month pilot test with 1,600 patients of The Cleveland Clinic

WikipediaDossia

• The Dossia Founders Group: AT&T;, Applied Materials, BP, Cardinal Health, Intel, Pitney Bowes, sanofi-aventis and Wal-Mart

• Based on Indivo technology from Boston Children’s Hospital • “Initially, the data will come primarily from insurers’ databases and the

patient’s own annotations. As the system develops, additional information will come directly from the patient’s medical chart and various other sources.” [quote from Wikipedia] • The “additional information” never came.

• Dossia Official Site now lives on web.archive.org • 2006-~2010

Microsoft Healthvault• Still functioning!!! • PHR pitched at both consumers

and businesses • Goals:

• Drive adherence to care plans

• Analyze health data in one place

• Increase patient learning

• Features • Personal Analytics • Cross-platform support • Medical Records access • Engagement Platform • Action plans framework • Cortana integration • Activity feed

https://www.healthvault.com/en-us/healthvault-insights/

Health Record Banking Alliance

• Increase public awareness of personal health records and health record banks

• Educate key stakeholder decision-makers in organizations and communities about the benefits of personal health records and health record banks

• Monitor proposed legislation and regulations and how they might promote or retard the building of health record banks

• Share lessons learned and best practices in personal health records and health record banks

• Identify funding strategies for building and sustaining health record banks

• Advise and promote companies that offer products and services in the personal health record/health record bank space

http://www.healthbanking.org