ODLs (Observations of Daily Living): A New Paradigm for Patient-

Provider Communication Peter Chira, MD MS

Instructor in Pediatric RheumatologyLucile Packard Children’s Hospital

Stanford University School of MedicinemHealth Initiative, West Coast Seminar

September 18, 2009

Observations of Daily Living (ODLs): what are they & why should we care?

• With today’s technology, multiple sources of information reflecting patterns of everyday living can be collected with minimal effort.

• These data can be represented and interpreted such that patients can take action and clinicians can integrate new insights into clinical practice when used with other medical data found in a traditional electronic medical record.

Observations of Daily Living (ODLs): what are they & why should we care?

• Mobile technologies can and will facilitate this change in communication, information sharing, and data collection.

• Discrete ODLs such as blood pressure readings, minutes exercised, weight, or blood glucose readings are data captures that have obvious utility and ease of collection― softer data elements may be just as useful but how do we gather and use them?

• A new level of personalization of health and well-being can be achieved if we can combine all of these ODLS along with traditional outcome measurements found in EMR data.

Project HealthDesign• Project HealthDesign: Rethinking the Power and

Potential of Personal Health Records is a $10-million national program funded through the Robert Wood Johnson Foundation’s (RWJF) Pioneer Portfolio.

• Project HealthDesign stimulates innovation in the development of personal health record (PHR) systems by transforming the concept of PHRs as data collection tools to PHRs as a foundation for action and improved health decision-making.

Project HealthDesign• In Round 1 of funding, with additional support

from the California HealthCare Foundation, we were one of nine multidisciplinary teams to create a range of tools that addressed specific but complex self-management tasks.

• Our team was initially focused on discovering what elements were crucial for teens with chronic diseases to understand their health and better manage their condition, and learn how and if technology has a role in this process.

Round 1 PHD Projects

• Stanford—Living Profiles• UCSF—PHR app for coordinating breast cancer care• UMass—PDA for pain medication management• Vanderbilt—PHR device for transitioning young CF patients to self

care• TRUE Research Foundation—PHR app for people with diabetes• RTI International—PHR device to encourage exercise in sedentary

adults• U Colorado, Denver—portable touch screen for med management

in older people• U Rochester—Voice activated system to provide personalized

responses in people with congestive heart failure• U Washington— Mobile PHR to assist with diabetes management

LIVING PROFILES Primary goal and innovation is to design a new communication space for teens and their caregivers.PHR tools that increase self awareness and spark meaningful conversation will empower a healthy transition from pediatric to adult care.

Our methodology

The Approach Engage teens through the entry points that they find meaningful.

32 patients volunteered

14- to 18-years-old

CHOC’s Hematology Clinic

10 males and 6 femalesStanford Pediatric Rheumatology

11 females and 5 males We conducted in-home interviews and engaged teens in probe activities.

Cultural probesRanging from highly directed to very interpretative activities, 8 unique probes were distributed to solicit responses that are difficult or impossible to obtain in an interview or clinical setting.

We discovered disconnections and design opportunities

Teen patients consistently define their quality of life through engagement with their social networks and mood—not by illness.

Teens define and chart their future without referencing their condition.

Where’s the kidney transplant?The hospitalizations? The pills?

TEEN DISCONNECT

The definition of “private” is changing in the networked world.

Q: So you’ve set [your Myspace page] for “Private.”

Irene: Yes.

Q: So how many friends are in your private circle?

Irene: I have 50 friends.

Q: Out of your 50 friends and family… how many are active?

Irene: … the majority of them are active. But not all are close… People

that I am kind of close to, but not as close as my friends (at my

new school).

Q: Good to know.

Teens when asked if they have any questions—they’ll say no.

Teens when asked if they would like to know more about something will open up.

Take away!The communication gap between teens and

caregivers can be bridged—more importantly, teens with chronic health conditions want to bridge it.

Teens are highly engaged in their health– They just define quality of life differently. Their measurements? social network & mood.– Teens may be more holistic

What’s meaningful for teens is often meaningful for caregivers too. – They just use a different language to express it.– Improve quality of care

PHRs that use the language of teens will sustain their interest– teen communication includes music, pictures, emotion, network technology, and self expression– emotional connections

Our Vision:

Major conceptA teen’s PHR will collect multiple elements of his/her life that go beyond traditional health information (i.e. the electronic medical record). By sharing this information which encompasses softer less discrete ODLs with other people (including their providers), the teen can take more control and responsibility of his/her health condition

Our vision

• Video

http://livingprofiles.net/?page_id=58

Living Profiles

ODLs and mobile technologies: the LIVING PROFILES example

Opportunities

• Round 2 Project HealthDesign is focused on ODLs as the next build-out for personal health tools and applications and how to integrate them into clinical practice

• We are working on adding elements to the mood meter to have a better algorithm of word presentation, search, and association with designated mood inputs but also to potentially include other inputs such as facebook and twitter status updates.

• We understand that mobile technologies will be integral to this system’s success.

Contact information

• For any questions about the project, you can reach me at pchira@stanford.edu

• Office: 650-723-8295

• For more on the project, see http://livingprofiles.net/

• For more about Project HealthDesign, see http://www.projecthealthdesign.org/home