Presentation on Observations of Daily Living (ODLs) by Peter Chira at mHealth Initiative Seminar in San Francisco, September 18, 2009

1. ODLs (Observations of Daily Living):
A New Paradigm for Patient-
Provider Communication
Peter Chira, MD MS
Instructor in Pediatric Rheumatology
Lucile Packard Children’s Hospital
Stanford University School of Medicine
mHealth Initiative, West Coast Seminar
September 18, 2009

2. 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.

3. 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.

4. 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.

5. 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.

6. 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

7. 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.

8. Our methodology

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

10. Stanford Hematology Clinic
CHOC’s Pediatric Rheumatology
32 patients volunteered interviews and
We conducted in-home
11 females andin probe activities.
14-malesteens6 5 males
engaged and females
10 to 18-years-old

11. Cultural probes
Ranging 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.

12. 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.

13. Teens define and chart their future without
referencing their condition.
Where’s the kidney transplant?
The hospitalizations? The pills?
TEEN DISCONNECT

14. 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.

15. 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.

16. Take away!
The communication gap between teens and
caregivers can be bridged—more
importantly, teens with chronic
health conditions want to bridge
it.

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

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

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

20. Our Vision:

21. Major concept
A 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

22. Our vision
• Video
http://livingprofiles.net/?page_id=58

23. Living Profiles

24. ODLs and mobile technologies:
the LIVING PROFILES example

25. 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.

26. 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