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Participatory mHealth:
         an opportunity for innovation in healthcare, wellness, research

                        Deborah Estrin, destrin@cs.ucla.edu, http://cens.ucla.edu/Estrin
                            with collaborators from CENS, UCLA and UCSF (Ida Sim)


  Patient self-care innovation happens outside the traditional enterprise and
                               clinical workflows

                         but it can still contribute to, and be, evidence-based




Monday, July 25, 2011                                                                      1
Why mobile/mHealth?


          •3 lifestyle behaviors (poor diet, lack of exercise, smoking) cause
           1/3rd of US deaths; 50% Americans have 1 or more chronic
           diseases; age of onset getting younger.
          •mHealth apps allow care support/data collection 24x7--chronic
           disease prevention/management/research as part of daily life
          •affordability/adoptability could support groundswell of medical
           discovery, evidence-based practice about treatment/prevention


    vision: support individuals, communities, clinicians to continuously
      improve patient-centered, personalized, health and healthcare

       mobile devices offer proximity, pervasiveness, programmability,
                               personalization

                        complementary to Internet interventions

Monday, July 25, 2011                                                           2
Mobile devices can extend interventions and research beyond the
                        reach of traditional clinical care
    168 hours a week...1440 minutes a day...(but not necessarily 365 days a year)


                our actions                  our self report              personal data repository


                                                                     experience
                                                                  sampling streams

                                                                   context and
                                                                  activity traces
                Photo: Marshall Astor, WWW




                                                    aggregate measures,
                                                      trends, patterns

                                                      event detection

                        visualization                                          processing
Monday, July 25, 2011                                                                                3
Whose mHealth?
   •
       A woman who is pre-diabetic tracks how eating/exercise habits
       affect weight and fatigue; also explores effective, comfortable blood
       pressure Rx dosage.
   •
       A young man who is struggling to find a treatment plan for
       depression believes medication dose is ineffective; doctor blames
       poor sleep habits/non-adherence. Patient self-monitoring includes
       medication reminder/verifications, sleep survey, activity traces, to
       guide adjustments in care plan, discussion of root causes.
   •
       A middle-aged woman who does not respond well to medication
       for psoriasis monitors diet, stress, environmental factors; initiates
       data campaign via social networking site for psoriasis sufferers. Each
       volunteer runs mHealth app for 2-months to create large data set to
       mine for patterns that precede flare-ups.
   •
       A group of high schoolers with asthma map their inhaler use and
       make a case for shifting Track practice to an alternate location
       farther from the freeway

Monday, July 25, 2011                                                           4
Integrated personal data streams create Living Records
 { UI SKETCH }                                                                                                Jane Doe              Messages (1)        Create ODL




                                prev month    May 2009        next month
                                                                                                                         Automatically prompted, geocoded, uploaded,
      Interventions


      May 1                                                                                         May 31
                                                                                                                         analyzed:
                                                                                                             Drug Prescribed
                                                                                                             Patient prescribed new daily medication.

                                                                                                             START DATE: May 26, 2009

      Weight in pounds Measurements and trends for the month.                                                AMOUNT: 200 mg
                                                                                                                           - physiological (weight, BP, glucose...)
                                                                                                             FREQUENCY: One pill twice per day, once in the
160                                                                                                              morning and once in the evening.


                                                                                                                           - patient reporting (medication,
                                                                                                             PREV. AMT.: 150 mg



                                                                                                                             symptoms, stress factors)
                                                                                                             PREV. FREQ.: Same

                                                                                                             NOTES:

                                                                                                               Enter observations here.



                                                                                                                           - activity (location traces, exercise, sleep)
150
      May 1                                                                                         May 31


      Blood Pressure Measurements and trends for the month.


                                                                                                                           - contextual, environmental,
                                                                                                                                             {moves up and down
                                                                                                                                             w/ scrolling, meta data
230    SYSTOLIC                                                                                                                              changes depending on
                                                                                                                                             what is selected on left}

       DIASTOLIC
                                                                                                                             social factors
 0                                                                                                                       Technical challenge to extract relevant
                                                                                                                         features, trends, patterns, anomalies
      May 1                                                                                        May 31



      Map Traces and stationary times with points of interest highlighted

         Gym        Fast Food       Park




                                                                            switch to full screen view map




                                   Processed/filtered personal data streams would become part
                                   of emerging PHR/EHRs (complementary not duplicative)
                                                                                                                                                                         5
 Monday, July 25, 2011                                                                                                                                                       5
Why focus on open architecture ?
                               broad applicability (diseases, demographics), heterogeneous/‘dual’ use (treatment,
                                 engagement, evidence), evolving methodologies, need for innovation ecosystem

                                Stovepipe Architecture                    Open mHealth Architecture




                                   Patient/Caregivers                          Patient/Caregivers                          Its not just a mobile app:

                                                           Analysis/
                                                         visualization/
                                                                                                                           • authoring prompts,
                                                           feedback                                   Re-usable health       triggers
     A P P L I C A T I O N S




                                                                                                      data and knowledge
                                                                                                      services
                                                          Processing

                                                                                                                           • Individual feedback,
                                                            Storage
                                                                                                      Standardized
                                                                                                      personal data
                                                                                                                             tailoring
                                                                                                      vaults and health
                                                         Data transport
                                                                                                      specific data
                                                                                                      exchange protocols   • analysis and
                                                         Data capture
                                                                                                                             visualization

                                   Mobile platforms                            Mobile platforms                            • Personal data vaults
                                   iPhone/Android/                             iPhone/Android/
                                    Feature Phones                              Feature Phones




                                                                                                                                                        2
Monday, July 25, 2011                                                                                                                                   6
An open modular system is critical to foster rapid and meaningful
                        exploration and innovation



                                    developers and data users:                              mobile app users:
                                   clinicians, data analysts, etc.                   patients and healthy individuals

                                                                                                                  self
                                                                                                                report
                                       data dash-       scripting                 reminders       feedback
                         APPLICATION                                                                               &
                                        boards            tools                        &              &
                               LAYER                                                                           automate
                                                                                   triggers       messaging
                                                                                                                   d
                                                                                                               measures


http://openmhealth.org
                                                           extract trends,         feedback using
                                          ANALYSIS
                                                             anomalies,            data and social
                                            LAYER
                                                            correlations               media
                                                                                                                import /
                                                                                                                 export

                                                               standardized data semantics

                                                                     identity management                       EHR/PHR,
                                                     DATA
                                                                     data security, privacy                   social media
                                                 SERVICES
                                                                         configuration
                                                                      Personal Data Vault



                                                                                              Swiernik, Estrin, Sim, et al 7
Monday, July 25, 2011                                                                                                        7
Open architectures enable privacy to be architected as well:
                     Personal Data Vault:
                    allow participants to retain control over their raw data

                        Mobile App                  Personal                    Third Party
                                                   Data Vault                    Services
                - Data Capture / Upload                                   - Analytics for Personal
                (Prompted, Automated)          - User Identity and        Data Streams
                                               Authentication
                - Reminders                                               - Interface to Clinical Care
                                               - Long-term Data           Plan, Personnel
                - Feedback, Incentives         Management
                                                                          - Integration with EHR/PHRs

                                                                          - Cross Patient Aggregation




              Well defined interfaces allow    Patient defined selective    Well defined interfaces allow
              mobile functions to be mixed,   sharing with Open mHealth   analytics functions to be mixed,
              matched, and shared             Server function             matched, shared, compared


   vault + filters = granular, assisted control over what/when you send
   to whom, what data says about you, whether you reveal who you are or
   share anonymously, ...
Monday, July 25, 2011                                                                                        8
Closing remarks
      “If you can’t go to the field with the sensor you want...go with the sensor you have!”
      “The power of the Internet, the reach of the phone (Voxiva)”

      Humans are in this loop--so HCI, privacy, visualization, bias, are part of research
      agenda, and end to end systems that users can exercise are part of the process

      It takes a healthy research ecosystem to bring information technology innovations to
      meaningful societal use--Open architectures and platforms are a key building block.




                                                                                     24

Monday, July 25, 2011                                                                          9
Acknowledgments: Collaborators and Sponsors
  Collaborators
      Technology faculty, PIs:
      Jeff Burke, Deborah Estrin, Mark Hansen, Ramesh Govindan, Martin Lukac, Nithya
      Ramanathan, Mani Srivastava
      Application/domain expert faculty/PIs (Health science, Education, Ecology):
      Jacqueline Casillas, Patricia Ganz, Jeff Goldman, Eric Graham, Jerry Kang, Jenny Kim, Jane
      Margolis, Maria Teresa Ochoa, Mary Jane Rotheram-Borus, Ida Sim (UCSF), , Dallas
      Swendeman, Michael Swiernik
      Students, staff:
      Staff: Betta Dawson, Mo Monibi, Joshua Selsky, Eric Yuen, Ruth West,
      Graduate students: Amelia Acker, Faisal Alquaddoomi, Peter Capone-Newton, Patrick Crutcher,
      Hossein Falaki, Brent Flagstaff, John Hicks, Donnie Kim, Keith Mayoral, Min Mun, Sasank
      Reddy, Jean Ryoo, Vids Samanta, Katie Shilton, Masanao Yajima, Nathan Yau,
      Undergraduate students: Jameel Al-Azeez, Joey Degges, Gleb Denisov, Cameron Ketcham,
      Ashley Jin, Chenyang Xia

  Sponsors and Partners/Collaborators
      UCLA centers: CENS, REMAP, Global center for families and children, Health Sciences

      Federal funding: NSF: NETS-FIND Program, OIA, Ethics, BPC; NIH, NOAA

      Corporate funding: Google, Intel, MSR, Nokia, T-Mobile, Cisco, Sun (RIP)

      Foundations/NGOs: The California Endowment, Project Surya, Woodrow Wilson Center


Monday, July 25, 2011                                                                              10

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Participatory OpenmHealth

  • 1. Participatory mHealth: an opportunity for innovation in healthcare, wellness, research Deborah Estrin, destrin@cs.ucla.edu, http://cens.ucla.edu/Estrin with collaborators from CENS, UCLA and UCSF (Ida Sim) Patient self-care innovation happens outside the traditional enterprise and clinical workflows but it can still contribute to, and be, evidence-based Monday, July 25, 2011 1
  • 2. Why mobile/mHealth? •3 lifestyle behaviors (poor diet, lack of exercise, smoking) cause 1/3rd of US deaths; 50% Americans have 1 or more chronic diseases; age of onset getting younger. •mHealth apps allow care support/data collection 24x7--chronic disease prevention/management/research as part of daily life •affordability/adoptability could support groundswell of medical discovery, evidence-based practice about treatment/prevention vision: support individuals, communities, clinicians to continuously improve patient-centered, personalized, health and healthcare mobile devices offer proximity, pervasiveness, programmability, personalization complementary to Internet interventions Monday, July 25, 2011 2
  • 3. Mobile devices can extend interventions and research beyond the reach of traditional clinical care 168 hours a week...1440 minutes a day...(but not necessarily 365 days a year) our actions our self report personal data repository experience sampling streams context and activity traces Photo: Marshall Astor, WWW aggregate measures, trends, patterns event detection visualization processing Monday, July 25, 2011 3
  • 4. Whose mHealth? • A woman who is pre-diabetic tracks how eating/exercise habits affect weight and fatigue; also explores effective, comfortable blood pressure Rx dosage. • A young man who is struggling to find a treatment plan for depression believes medication dose is ineffective; doctor blames poor sleep habits/non-adherence. Patient self-monitoring includes medication reminder/verifications, sleep survey, activity traces, to guide adjustments in care plan, discussion of root causes. • A middle-aged woman who does not respond well to medication for psoriasis monitors diet, stress, environmental factors; initiates data campaign via social networking site for psoriasis sufferers. Each volunteer runs mHealth app for 2-months to create large data set to mine for patterns that precede flare-ups. • A group of high schoolers with asthma map their inhaler use and make a case for shifting Track practice to an alternate location farther from the freeway Monday, July 25, 2011 4
  • 5. Integrated personal data streams create Living Records { UI SKETCH } Jane Doe Messages (1) Create ODL prev month May 2009 next month Automatically prompted, geocoded, uploaded, Interventions May 1 May 31 analyzed: Drug Prescribed Patient prescribed new daily medication. START DATE: May 26, 2009 Weight in pounds Measurements and trends for the month. AMOUNT: 200 mg - physiological (weight, BP, glucose...) FREQUENCY: One pill twice per day, once in the 160 morning and once in the evening. - patient reporting (medication, PREV. AMT.: 150 mg symptoms, stress factors) PREV. FREQ.: Same NOTES: Enter observations here. - activity (location traces, exercise, sleep) 150 May 1 May 31 Blood Pressure Measurements and trends for the month. - contextual, environmental, {moves up and down w/ scrolling, meta data 230 SYSTOLIC changes depending on what is selected on left} DIASTOLIC social factors 0 Technical challenge to extract relevant features, trends, patterns, anomalies May 1 May 31 Map Traces and stationary times with points of interest highlighted Gym Fast Food Park switch to full screen view map Processed/filtered personal data streams would become part of emerging PHR/EHRs (complementary not duplicative) 5 Monday, July 25, 2011 5
  • 6. Why focus on open architecture ? broad applicability (diseases, demographics), heterogeneous/‘dual’ use (treatment, engagement, evidence), evolving methodologies, need for innovation ecosystem Stovepipe Architecture Open mHealth Architecture Patient/Caregivers Patient/Caregivers Its not just a mobile app: Analysis/ visualization/ • authoring prompts, feedback Re-usable health triggers A P P L I C A T I O N S data and knowledge services Processing • Individual feedback, Storage Standardized personal data tailoring vaults and health Data transport specific data exchange protocols • analysis and Data capture visualization Mobile platforms Mobile platforms • Personal data vaults iPhone/Android/ iPhone/Android/ Feature Phones Feature Phones 2 Monday, July 25, 2011 6
  • 7. An open modular system is critical to foster rapid and meaningful exploration and innovation developers and data users: mobile app users: clinicians, data analysts, etc. patients and healthy individuals self report data dash- scripting reminders feedback APPLICATION & boards tools & & LAYER automate triggers messaging d measures http://openmhealth.org extract trends, feedback using ANALYSIS anomalies, data and social LAYER correlations media import / export standardized data semantics identity management EHR/PHR, DATA data security, privacy social media SERVICES configuration Personal Data Vault Swiernik, Estrin, Sim, et al 7 Monday, July 25, 2011 7
  • 8. Open architectures enable privacy to be architected as well: Personal Data Vault: allow participants to retain control over their raw data Mobile App Personal Third Party Data Vault Services - Data Capture / Upload - Analytics for Personal (Prompted, Automated) - User Identity and Data Streams Authentication - Reminders - Interface to Clinical Care - Long-term Data Plan, Personnel - Feedback, Incentives Management - Integration with EHR/PHRs - Cross Patient Aggregation Well defined interfaces allow Patient defined selective Well defined interfaces allow mobile functions to be mixed, sharing with Open mHealth analytics functions to be mixed, matched, and shared Server function matched, shared, compared vault + filters = granular, assisted control over what/when you send to whom, what data says about you, whether you reveal who you are or share anonymously, ... Monday, July 25, 2011 8
  • 9. Closing remarks “If you can’t go to the field with the sensor you want...go with the sensor you have!” “The power of the Internet, the reach of the phone (Voxiva)” Humans are in this loop--so HCI, privacy, visualization, bias, are part of research agenda, and end to end systems that users can exercise are part of the process It takes a healthy research ecosystem to bring information technology innovations to meaningful societal use--Open architectures and platforms are a key building block. 24 Monday, July 25, 2011 9
  • 10. Acknowledgments: Collaborators and Sponsors Collaborators Technology faculty, PIs: Jeff Burke, Deborah Estrin, Mark Hansen, Ramesh Govindan, Martin Lukac, Nithya Ramanathan, Mani Srivastava Application/domain expert faculty/PIs (Health science, Education, Ecology): Jacqueline Casillas, Patricia Ganz, Jeff Goldman, Eric Graham, Jerry Kang, Jenny Kim, Jane Margolis, Maria Teresa Ochoa, Mary Jane Rotheram-Borus, Ida Sim (UCSF), , Dallas Swendeman, Michael Swiernik Students, staff: Staff: Betta Dawson, Mo Monibi, Joshua Selsky, Eric Yuen, Ruth West, Graduate students: Amelia Acker, Faisal Alquaddoomi, Peter Capone-Newton, Patrick Crutcher, Hossein Falaki, Brent Flagstaff, John Hicks, Donnie Kim, Keith Mayoral, Min Mun, Sasank Reddy, Jean Ryoo, Vids Samanta, Katie Shilton, Masanao Yajima, Nathan Yau, Undergraduate students: Jameel Al-Azeez, Joey Degges, Gleb Denisov, Cameron Ketcham, Ashley Jin, Chenyang Xia Sponsors and Partners/Collaborators UCLA centers: CENS, REMAP, Global center for families and children, Health Sciences Federal funding: NSF: NETS-FIND Program, OIA, Ethics, BPC; NIH, NOAA Corporate funding: Google, Intel, MSR, Nokia, T-Mobile, Cisco, Sun (RIP) Foundations/NGOs: The California Endowment, Project Surya, Woodrow Wilson Center Monday, July 25, 2011 10