ODLs (Observations Of Daily Living) Chira M Hi091809


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

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ODLs (Observations Of Daily Living) Chira M Hi091809

  1. 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. 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. 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. 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. 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. 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. 7. LIVING PROFILESPrimary goal and innovation is to designa new communication space for teensand their caregivers.PHR tools that increase self awarenessand spark meaningful conversation willempower a healthy transition frompediatric to adult care.
  8. 8. Our methodology
  9. 9. The Approach Engageteens through the entrypoints that they findmeaningful.
  10. 10. Stanford Hematology ClinicCHOC’s Pediatric Rheumatology32 patients volunteered interviews andWe conducted in-home11 females andin probe activities.14-malesteens6 5 malesengaged and females10 to 18-years-old
  11. 11. Cultural probesRanging from highly directed to veryinterpretative activities, 8 unique probes weredistributed to solicit responses that are difficult orimpossible to obtain in an interview or clinicalsetting.
  12. 12. We discovered disconnections anddesign opportunitiesTeen patients consistently define theirquality of life through engagement with theirsocial networks and mood—not by illness.
  13. 13. Teens define and chart their future withoutreferencing their condition. Where’s the kidney transplant? The hospitalizations? The pills? TEEN DISCONNECT
  14. 14. The definition of “private” is changing inthe 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. 15. Teens when asked if they have anyquestions—they’ll say no.Teens when asked if they would like toknow more about something will open up.
  16. 16. Take away!The communication gap between teens andcaregivers can be bridged—moreimportantly, teens with chronichealth conditions want to bridgeit.
  17. 17. Teens are highly engaged in theirhealth– They just define quality of lifedifferently. Their measurements?social network & mood.– Teens may be more holistic
  18. 18. What’s meaningful for teens isoften meaningful for caregiverstoo.– They just use a differentlanguage to express it.– Improve quality of care
  19. 19. PHRs that use the language ofteens will sustain their interest– teen communication includesmusic, pictures, emotion, networktechnology, and self expression– emotional connections
  20. 20. Our Vision:
  21. 21. Major conceptA teen’s PHR will collect multiple elementsof his/her life that go beyond traditionalhealth information (i.e. the electronicmedical record). By sharing thisinformation which encompasses softerless discrete ODLs with other people(including their providers), the teen cantake more control and responsibility ofhis/her health condition
  22. 22. Our vision• Videohttp://livingprofiles.net/?page_id=58
  23. 23. Living Profiles
  24. 24. ODLs and mobile technologies:the LIVING PROFILES example
  25. 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. 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