From the iPhone to the EMR:Can patients’ personal health data help improve their

clinical care?

Learnings from Project HealthDesign

A national program of the Robert Wood Johnson Foundation

Chief Technology and Information Officer

Robert Wood Johnson Foundation

Stephen Downs, SM, FACMI

Project HealthDesign• Engaged five teams to demonstrate a new vision for improved patient care

through integration of patient-generated health data

• Explored the technical, legal and policy implications of incorporating patient generated data in health care

• BreathEasyAdults with asthma

• Chronology.MDYoung adults with Crohn’s Disease

• dwellSenseElders at risk of cognitive decline

• EstrellitaHigh-risk infants and their caregivers

• iN TouchLow-income teens and young adults managing obesity

National Program Director, Project HealthDesign

University of Wisconsin—Madison

Patricia Flatley Brennan,

RN, PhD

Observations of Daily Living

dwellSense: An application for elders at risk of cognitive decline

Estrellita: Using ODLs among Low Birth Weight Infants & their Caregivers

Chronology.MD: A mobile application for adults with inflammatory bowel disease

“Every aspect of this work is focused on making patient communications of a complex health condition easier”

iN Touch: ODLs via mobile platforms for youth with obesity and depression

“We’ll put the health decisions in teens’ hands and extend the support of the clinicians beyond the clinic.”

BreathEasy: An application for adults with asthma & depression or anxiety

“What we're developing will enable patients and clinicians to communicate more quickly and easily . . .”

Challenges: Workflow Integration

Challenges: Data Integration• Third party storage• Integration with EHR

Why we should go forward – Patient View• ‘I don’t feel so alone’ (patient w/ Crohn’s)

• ‘My quality of life has gone way up’. . . ‘my weight is up’ . . . ‘I’m not vomiting every day’

• ‘It’s easier to summarize and share between-visit health events and health status’

• ‘good intentions to use the app, but not enough energy at the end of the day’ (parents of twin at-risk infants and two pre-school kids)

• ‘I charge the study phone before my personal cell’• ‘missed more medication doses than I expected’ (elder at risk)

Why we should go forward – Provider View

• Patient visits and prescriptions decreased• Able to identify when medications weren’t being

taken or were taken incorrectly• Adjusted medication regimens • Motivated patients to adhere to treatment plan• Provided a measure of cognitive and functional

performance over time

Project HealthDesign

A brief video about the project’s latest round of design and evaluation

Co-Principal Investigator, iN Touch

San Francisco State University

Katherine Kim, MPH, MBA,

PhD Candidate

19

Health Happens in Real-time

Real-time and Real-life

20

Low-income, Minority YouthMission High School

Public Hospital

Intervention

21

Built by TheCarrot.com

22

Viewed in EHR or in web portal

Sample Data

Results• 35% showed depressive symptoms, no change• Reduced waist circumference by 1.2 inches• Improved confidence in self-management (Patient

Activation Measure)• Youth engagement and empowerment

– Youth Advisory Board– Technology usefulness, usability– Mindfulness– Coaching

23

Co-Principal Investigator, BreathEasy

Virginia Commonwealth University

Stephen Rothemich,

MD

Example 1: Significant improvement after a controller medication was started without an office

visit(early 30’s, smoker, no other significant health issues)

Example 2: Different diagnosis suspected, escalated to specialist care, immunotherapy planned

(early 50’s with comorbid hypertension, depression, chronic pain, and lupus erythematous)

Provided clinically useful information Patient education needs addressed Therapy escalated Diagnoses changed

Manageable for small numbers of participants Triage model insulated docs from data overload Built on existing workflow for incoming messages Large numbers would require staffing changes

Opportunities for better EMR integration Potential tool for chronic disease management

Impact on Clinical Care

National Advisory Council, Project HealthDesign

Johns Hopkins Medical Institutions

Michael Christopher Gibbons,

MD, MPH

Rapidly Evolving Society

•Prevalence of Chronic Disease• Burgeoning of the Senior population• Increasing Longevity• Rising Healthcare Costs• Growing population of Minorities,

immigrants & underserved

Personal Health Records

Early Innovators• Google Health• Microsoft Health Vault

•Patient Portals• Kaiser Permanente• Practice Fusion• My Personal Health Record

• Technical Innovators (collaboration)• Patients Like Me• Cure Together

RWJF Contribution to the PHR evolution

Functional Innovation• Many types of data• Variety of platforms

•Knowledge Innovation• Observations of Daily living

Future PHR Opportunities

Businesses & Developers• Technically Enhanced Solutions• Functionally Superior Solutions• User Focused Solutions

• Improved health outcomes through• Improved Usability• Higher User satisfaction• Better User Experiences

Questions?

projecthealthdesign.orgTwitter: @PrjHealthDesign