Project HealthDesign:Patients, Personal Health Records, Providers … & Policy

Gail Casper, R.N., Ph.D.University of Wisconsin – Madison

School of Nursing

About Project HealthDesign

Round 1: 2006-2009

•new vision for PHRs

• creating tools for patient action

Round 2: 2010 - 2012

•integrating patient data

New Vision for PHRs:

Tools for Patient Action

• user-centered design

• prototyping & testing tools

Project HealthDesign

Patient Records

After Stead et al, 2005

DATA

Personal Health Assistant

University of Rochester

PI: George Ferguson, PhD

Observations of Daily Living (ODLs)

• not in EMRs

• patient-originated, user-driven

• > clinical measures taken at home

• selectively shared

Evaluating how ODLs can be collected,

interpreted, displayed and acted upon by

both patients and clinicians

Round 2

• Embedded Assessment Seniors with arthritis and at risk of cognitive decline

• BreathEasyAdults with asthma and depression or anxiety

• InTouchTeens who are managing obesity and depression

• Crohnology MDAdults with Crohn’s Disease

• FitBabyPre-term, at-risk infants and their caregivers

Project HealthDesign: Current Project Teams

ODLs - the most important feature of the PHRs

Challenges

• Privacy

• Payment

• Practice

Questions

• How do we cross the patient-clinician gap?

• What are the most compelling privacy issues?

• How can we mitigate liability concerns?

• How can vendors’ progress be leveraged?

• What is the business model for PHRs?

Watch us as we work

www.projecthealthdesign.org

Twitter: @PrjHealthDesign

Embedded Assessment of Elder

Activities for Augmenting PHRsPrincipal Investigator:

Anind K. Dey, PhD, Carnegie Mellon University

Project HealthDesign: Current Project Teams

BreathEasy: A PHR for adults with asthma

& depression or anxiety

Principal Investigators:

Barbara L. Massoudi, MPH, PhD, RTI International

Stephen Rothemich, MD, MS, Virginia Commonwealth

University

Project HealthDesign: Current Project Teams

“With the technologies we're developing,

patients and clinicians will be able to

communicate more quickly and easily…”

iN Touch: ODLs via mobile platforms for

youth with obesity and depression

Principal Investigators:

Katherine Kim, MPH, MPA, San Francisco State

University

Christina Sabee, PhD, San Francisco State University

Project HealthDesign: Current Project Teams

“We hope to…put the control of health

decisions in the hands of the patient and

extend the support of the clinicians beyond

the clinic’s boundaries.”

Crohnology.MD: A mobile PHR for adults

with inflammatory bowel disease

Principal Investigators:

Linda Neuhauser, MPH, DrPH, University of California, Berkeley

Jonathan P. Terdiman, MD, University of California, San Francisco

Deryk Van Brunt, DrPH, Healthy Communities Foundation

Project HealthDesign: Current Project Teams

“Every aspect of this work is focused on

making patient communications of a

complex health condition easier…”

FitBaby: Using ODLs among Low Birth

Weight Infants & their Caregivers

Principal Investigators:

Gillian Hayes, PhD, University of California, Irvine

Karen Cheng, PhD, Charles Drew University

Project HealthDesign: Current Project Teams

Round 1:

Users’ ethical, legal, and social concerns

about sharing PHR information

are real, but surmountable

•A team from University of Miami Bioethics Program looked at the ethical,

legal and social issues (ELSI) associated with the grantee projects

•Top three overarching ELSI concerns

�control over access to information

�managing privacy rights

�shifting shared decision-making to the patient user

What is the Strength of Evidence for PHRs?• evidence is beginning to accumulate supporting that

PHRs do/can have a positive impact on health both at an individual and population level

– improved access to care

– improved access to targeted information

– self-management of chronic diseases

– improved patient-provider communication

– access to social networking e.g. http://www.patientslikeme.com