Listening in the Moment: Project HealthDesign

Opens the Window on the Every-day Lives of Patients

Patricia Flatley Brennan, RN, PhDUniversity of Wisconsin-Madison

Madison, WI USASupport provided by UW Madison, RWJF

Exploring the practical implications of

observations of daily living

The CARE between the CARE –listening to the every-day experience of people

January June December

Professionals are experts in

clinical care

People are experts in every-day living

Observation of Daily LivingODLs

• Thoughts, feelings, behaviors & actions, and exposures

• Cues towards action rather than indicators of pathology

• Idiosyncratic, personally meaningful

Project HealthDesign

Reaching people in

every day life

People LIVE everyday, not just at the hospital or clinic

• http://www.projecthealthdesign.org/projects/round-1-projects/personal-health-application-for-diabetes-self-management

What’s important to Jim

1. Negotiating a loan2. Opening his own shop3. Stress4. Exercise5. Medication6. Hypoglycemia

Which of these DOESN’T have a SNOMED code?

The Language of Health in every-day

running

decide

medicationKeep in track

Play Basketball

Stress

See how I am doing

exercise

How to eatBlood

Sugar

Stay on top

Plan

Feedback

advice

Glucose

H1c

The Language of Health in every-day

running

decide

medicationKeep in track

Play Basketball

Stress

See how I am doing

exercise

How to eatBlood

Sugar

Stay on top

Plan

Feedback

advice

Glucose

H1c

The Language of Health in every-day

Patient Focused Patient Defined

running

decide

medicationKeep in track

Play Basketball

Stress

See how I am doing

exercise

How to eatBlood

Sugar

Stay on top

Plan

Feedback

advice

Glucose

H1c

The Language of Health in every-day

Patient Focused Patient Defined

Clinical Terms Observation ofDaily Living

running

decide

medicationKeep in track

Play Basketball

Stress

See how I am doing

exercise

How to eatBlood

Sugar

Stay on top

Plan

Feedback

advice

Glucose

H1c

The Language of Health in every-day

Patient Focused Patient Defined

Clinical Terms Observation ofDaily Living

runningdecide

medication

Keep in track

Play Basketball

Stress

See how I am doing

exercise

Eat right

Blood Sugar

Stay on top

Plan

Feedback

adviceBlood Glucose

H1c

HIT can bring the language of every day health into clinical care!

• Professional terms: Blood glucose, activity tolerance

• Personal terms: open my own shop, go for a run

Project HealthDesign Round 2

• Engaged five teams to demonstrate a new vision for improved patient care through integration of patient-generated health data into every day lives and clinical practice

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

• dwellSenseElders at risk of cognitive decline

• EstrellitaHigh risk infants and their caregivers

• Chronology.MDYoung adults with Crohn’s Disease

• BreatheEasyAdults with Asthma

• iN TouchLow-income teens and young adults

managing obesity

Observations of Daily Living

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 . . .”

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)

Challenges: Workflow Integration

Home

Patient ODLs:• Peak flow rate• Controller Med. Adherence• Rescue Med. Usage• Asthma Triggers• Asthma Symptoms• Activity Level/Types• Depression Level• Anxiety Level• Sleep Patterns• Smoking Habits

BreathEasy Mobile App

BreathEasy ArchitectureRTI

Messaging Server

Clinic

BreathEasy Dashboard

Nurses/Physicians

Web/App Server

PatientPatient

Challenges: Data Integration•Third party storage

•Integration with EHR

What did people do with ODLs?

• Recognize when symptoms became problematic

• Recognize effects of new medications on symptoms

• Increase awareness of triggers

• Reminders for daily tasks performance and monitoring

• Adhere to doctors’ instructions since s/he “would know”

• Know when medication refills were due

• Report about health during doctors’ appointments

• Gain insights to health behaviors, set goals, and improve health choices

The Patient Experience• ‘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)

What did clinicians do with ODLs?

• Change a target peak flow rates

• Make a new or correct an existing diagnosis

• Monitor psychological issues

• Understand of the impact of sleep and/or exercise on pain

• Track patient weight

• Make informed referrals based on increased knowledge of patients' symptoms

• Better understand patient health status at home

• Adjust medication regime

discovery.wisc.edu/lelhealthsystems.engr.wisc.edu

www.projecthealthdesign.org