Personal Health Records:

Whose Right? Whose Responsibility?

Whose Cost?Patricia Flatley Brennan, RN, PhD, FAAN

University of Wisconsin-MadisonSupported by grants from the National Library of Medicine, Intel

Corporation, and the Moehlman Bascom Professorship, UW-Madison

Plan for the talk

• Personal Health Records– Definition and History– PHR’s in the NHII

• PHRs: Functional Requirements• Necessary steps in achieving functional PHR

– Rights– Responsibility– Cost

• Envisioning a PHR System that supports personal & population health

Somewhere, not too far away...

John, a 41 year old man, presents at an annual physicaltwo major complaints: right lower quadranttenderness and a slight change in bowel habits

Shortly, however, the diagnosis is confirmed:

Familial Adenemotosis Polyposis (FAP)

DNA tests identify that the mutation is on Codon 1251.

Fear, and hope, lead John

to consult all of the experts

he can find.

John’s doctor, believing in

collaboration, sends John

all of the reports, makes a

recommendation

of surgery and solicits

John’s preferences.

John searches the Web, opts for surgery

John & his physician talkJohn & his physician talkI think you haveI think you havea bowel problema bowel problemWhat’s wrong?What’s wrong?

RLQ tendernessRLQ tenderness??? Family history??? Family history??? Blood Test??? Blood Test

00100-11100-00100-11100-1-110001000-1-110001000-11100110000111001100001000110010110001100101

Electronic Health Recordstranslate patient state into

computable forms

The The patient’spatient’s

statestate The Clinician’s The Clinician’s AssessmentAssessment

ComputerComputer

RecordsRecords

0110011011--11--011001100-00-0-00-11001100

SnoMEDSnoMED

NANDANANDA

CPTCPT

A complete picture of the patient needs lots of data!

John = 0001000-1000111John = 0001000-10001111000111100010010001111000100

0001000- 0001000- Serum sodium 131Serum sodium 131Atph 74Atph 74Hgb 41Hgb 41

0001000- 0001000- Insurance Insurance authorization:authorization:

OKOK

Genotype-matchGenotype-match0001000-0001000-

John’s family members’John’s family members’recordsrecords

0001000- 0001000-

Best practicesBest practices

We think health care occurs here

But health, and much of

health care, happens here

Personal Health

Information Management

???

?

?

? ?Manage

INFORMATION

Appointments Contact Info Med Schedule Treatment

Medical History Insurance Labs X-Rays

Immunizations Birth/Death RecordsSelf-Care Procedure Info

Self-Monitoring Provider info Literature Poison Control

Clinic/Hospital Info Other

Information Managed in the Home:

The Contexts of Care

• Living Environment

• Social Environments

• Psychological Environments

• Technological Environments

• Health Services Environments

The single, most important, personal health

information management tool

in the home…

Where Do People get Health Information?

0 5 10 15 20 25 30 35

Physician Clinic/Hospital Public Health Nurse

Library News Health Magazines

Internet Hotlines Reference Books

Alt Med Sources Family/Friends School

Classes Other

Physician

Family

But it’s not just one health care provider… it could be 2, or 4, or 8,

or…

The challenge of personal health

information management

• Clinical encounters with > 4 providers a year

• Recalling what happened when and with whom

• Sorting information from > 10 sources• Patient-net: patients as an information

intermediary

Components of a personal health information

system

Self-Monitoring

Clinical Records

Communication

Decision Support

A solution on the horizon?

NHII:Regional health information exchanges organized around

personal health records

Regional Health Information Exchange

Structure & Benefits of Structure & Benefits of

Health Information Exchange Health Information Exchange

PHPHPtPt

PBMPBM

LabsLabs

ProvProv PayersPayersPatient Improved quality Safer care Decreased cost

Providers Timely access Rapid universal access Increased safety quality Better coordinated care

Public Health Early detection Outcomes analysis Bio-terrorism

preparedness

Commercial Labs Enhanced public relations; Decreased EDI costs Efficiencies

Pharmacies/PBMs Reduced administrative

costs Increased prescription

compliance

Payers Improved service Improved clinical

management Better information

After Stead et al, 2005

Personal Health Records

The Personal Health Record is (an Internet-based)

set of tools that allows people to access and coordinate their life-long

health information and make appropriate parts of it available to

those who need it.

Personal Health Records Working Group, Markle Foundation, 2003

ELECTRONIC RECORDS:Electronic Health Records, Electronic Patient Records

& Personal Health Records

After Stead et al, 2005

Lay people develop robust,

complex mechanisms

of health information

management in the home.

Personal Health Records…

• are controlled by the person who decides which parts of their PHR can be accessed, by whom and for how long.

• contain information from one’s entire lifetime. • contain information from all health care providers. • are accessible from any place at any time.• are private and secure. • are “transparent.” • enable exchange of information with other health

information systems and health professionals.

What would people do with a PHR?

• Email my doctor • Track immunizations • Note mistakes in my record • Transfer information to new doctors • Get and track my test results

Maintaining contact with health care providers is a necessary

but not sufficient

function of PHRs!

What is health care & who’s involved?

Disease

Self Help Self Care Management

Community

Patient

Professional

PHR’s:Functional

Requirements

PHRs• Information

• Communication• Education

• Risk Appraisal• Disease Management• Health Promotion

• Scheduling

PHRs: Essential Attributes

UbiquitousAccurate

AuthoritativeAvailable

ComprehensibleCurrent

Complete

Making PHRs a reality

•Rights•Costs•Responsbilities

PHRs:Whose right?

Rights

• Patient’s right …to know

…control access• Care partnership rights

– Trusted communication– Mutuality

• Society’s rights of awareness

Balancing Stakeholder Rights

• Patient• Provider• Public Health• Payor• Policy Makers

PHR’s: Whose Cost?

Costs involved in PHRs

• Device or artifact• Information acquisition and recording• Information organization & retrieval• Information transport • Information review and interpretation

NetworkInfrastructure

Clinic Records

Xrays and labs

Patient-held

Hospitals

Doctor'sOffices

Public Health

Who pays for the PHRs?

Estimated Societal Impact of Estimated Societal Impact of Health Information ExchangeHealth Information Exchange

Point-of-Care Alone (POC)

Regional Sharing Alone

(RS)RS & POC

Ambulatory ADEs (events)

1,252,000 336,400 2,068,000

Duplicate Tests %, $

8%

($6.7b)

13-20% 20%

($15.1b)

ED Costs($ / visit)

?

(minimal)

$5-26 $26

Pharmacy(% savings)

22.4%

($18.3b)

19%

($15.5b)

28%

($26.9b)

Sources: Center for Information Technology Leadership, Patient Safety Institute

PHR’s: Whose

Responsibility?

Responsibilities

• Data integrity• Data utilization• Attention to preferences• Continuity of Care• Adherence to treatment plan

PHRs: Networks of Responsibility

Personal Health Records

Library

Hospital

Physician Office

Pharmacy

FurtiveRecords

Dentist

A Patient-centered Health Information Architecture

Consumer Health Information

Achieving a PHR-Centered Health Information Architecture

Personal Health Records

Library

Hospital

Physician Office

Pharmacy

FurtiveRecords

Dentist

Consumer Health Information

1. Policies that support information exchange

2. Infrastructure that enables information exchange

3. Knowledgeable populace

4. Engaged Providers

5. Sustainable financial strategies

“ask yourself if the step you contemplate is going to be of any

use to the poorest and weakest man

whom you have seenWill he gain anything by it?

Will it restore him to control over his life and destiny?…then you will find your doubts and

yourself melting away”

Gandhi,1947

healthsystems.engr.wisc.edu

Consumer health informatics

Clinic

Hospital

Physician Office

Pharmacy

FurtiveRecords

Dentist

Bringing it all together

SMART Patient

s

SMART Patients• Self-assured• Motivated• Aware• Resourceful• Talented

Where does technology fit in?

Personal Health Records:Information, communication, self-monitoring and decision support