partially joint work with Henry Potts and Katarzyna Stawarz; partially with the Help4Mood Consortium
The Hidden Stories
Be...
Overview
❖ What is Missing Data?
❖ The Story of Appropriation: Help4Mood
❖ The Story of Monitoring Work: Activity Trackers...
Missing Data
❖ informally: observations that we would like to be there,
or that should be there, but that are not
❖ Statis...
Goal
❖ Tell the hidden stories behind missing data by
understanding and describing data generation
processes
❖ qualitative...
The Appropriation of Help4Mood
depressioncomix.tumblr.com
Depression is a
change
relative to an
individual
baseline
Help4Mood: Supporting People with Depression
• daily monitoring
• of activity using
actigraph
• of mood, thought
patterns ...
One Help4Mood per Day
❖ Users interact with Help4Mood once a day
❖ Sessions can be short, medium, or long
❖ Planning algor...
Patient Focused Development
1. Actigraphy
2. Mood Tracker +
Actigraphy
3. Mood Tracker,
Thought Patterns,
Speech + Actigra...
Pilot RCT Participants
❖ Participants with Major Depressive Disorder (SCID
diagnosed)
❖ Use Help4Mood for 4 weeks
❖ Backgr...
Participants and Usage Patterns
❖ 18 in Romania, 7 in Scotland, 2 in Spain (EU Project)
❖ 14 treatment as usual (age 42 ye...
What is Going On With Me?
The monitoring part helped me understand some things [. . .]
sometimes I did not realize how I f...
Help4Mood as Coping
[. . .] when I felt very upset, very low, I preferred longer sessions [. . .]
because the session is p...
It Doesn’t (Quite) Work This Way
http://imgarcade.com/1/depressed-stick-figure/
Well-Designed
Monitoring
Self-Help
Internet...
It’s a complex adaptive system
http://www.thebolditalic.com/articles/3609-the-stick-figure-guide-to-kicking-depression
Indi...
The Story of Monitoring Work
The Chore of Monitoring
If at all possible, it would be good not to have the same questions
every day; or even if the ques...
Self-Reflection is Hard Work
“This wasn’t very pleasant.
Because you don’t go to therapy every day.
You wouldn’t go every ...
TRACKER
what
swimming
weightlifting
team sports
self-report
effort
e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
TRACKER
when
worried well
motivated for change
not tracking
during lazy days
what
swimming
weightlifting
team sports
stigm...
TRACKER
when
who job (e.g. nurses)
allergies
wrist anatomy
forgetting
to wear to bringto charge
worried well
techy
motivat...
http://whitemenwearinggoogleglass.tumblr.com/image/51710586195
http://www.cio.com/article/2452759/health/wearable-techs-di...
TRACKER
when
who job (e.g. nurses)
allergies
wrist anatomy
forgetting
to wear to bringto charge
worried well
techy
motivat...
http://thoughtstipsandtales.com/2014/11/06/fitbit-fun-ten-months-later/
http://thoughtstipsandtales.com/2015/03/05/fabulous...
TRACKER
when
who
forgetting is a function of
- user characteristics
- illness
- external stress
fit with identity
device
wh...
TRACKER
when
who
forgetting is a function of
- user characteristics
- illness
- external stress
fit with identity
device
wh...
When looking at studies:
People will do things for research,
to benefit others, to be part of something bigger,
and maybe a...
The Story of Hidden Missing Data
Hiding in Electronic Health Records
❖ Data go dark because of quality issues in data entry and
management (e.g., Chan et a...
We can only detect what is being observed.
Does that mean regular screening and monitoring?
What is the human cost of a fa...
Questions?
maria.wolters@ed.ac.uk
http://www.thebolditalic.com/articles/3609-the-stick-figure-guide-to-kicking-depression
I...
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The Hidden Stories Behind Missing Data

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In the literature on sensing and monitoring, missing data is often treated as a nuisance. Statisticians have investigated many ways of filling gaps in a data set, depending on whether the data is missing completely randomly, whether the patterns of missing data can be predicted from other variables in the data set, or whether the patterns of missing data are regular, but hard to predict from existing data.

In this talk, I argue that missing data is evidence for how people engage with sensors and devices. I outline the processes that result in the absence of data, and discuss how this contextual understanding can be used to improve interpretation and analytics.

This talk is based on joint work with the Help4Mood team (http://help4mood.info) and Henry Potts, UCL, and Katarzyna Stawarz, Bristol, during an Alan Turing Institute Summer Programme Small Group.

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The Hidden Stories Behind Missing Data

  1. 1. partially joint work with Henry Potts and Katarzyna Stawarz; partially with the Help4Mood Consortium The Hidden Stories Behind Missing Data Maria Wolters University of Edinburgh maria.wolters@ed.ac.uk @mariawolters http://www.slideshare.net/mariawolters
  2. 2. Overview ❖ What is Missing Data? ❖ The Story of Appropriation: Help4Mood ❖ The Story of Monitoring Work: Activity Trackers ❖ The Story of Hidden Missing Data: Electronic Health Records
  3. 3. Missing Data ❖ informally: observations that we would like to be there, or that should be there, but that are not ❖ Statistical treatment differs according to whether missing data are ❖ completely random ❖ predictable from existing data ❖ not predictable from existing data
  4. 4. Goal ❖ Tell the hidden stories behind missing data by understanding and describing data generation processes ❖ qualitatively for deeper understanding ❖ quantitatively to feed into data analysis and visualisation ❖ Current stage: setting out problem space in order to pick appropriate models
  5. 5. The Appropriation of Help4Mood
  6. 6. depressioncomix.tumblr.com Depression is a change relative to an individual baseline
  7. 7. Help4Mood: Supporting People with Depression • daily monitoring • of activity using actigraph • of mood, thought patterns & psycho- motor symptoms using talking head GUI • weekly one-page reports to clinicians Maria K. Wolters, Juan Martínez-Miranda, Soraya Estevez, Helen F. Hastie, Colin Matheson (2013). Managing Data in Help4Mood AMSYS ICST DOI: 10.4108/trans.amsys. 01-06.2013.e2
  8. 8. One Help4Mood per Day ❖ Users interact with Help4Mood once a day ❖ Sessions can be short, medium, or long ❖ Planning algorithm ensures ❖ different kinds of data are collected regularly, e.g. ❖ mood: every day ❖ speech: 1-3 times per week ❖ sessions are varied
  9. 9. Patient Focused Development 1. Actigraphy 2. Mood Tracker + Actigraphy 3. Mood Tracker, Thought Patterns, Speech + Actigraphy 4. Mood Tracker, Thought Patterns, Behavioural Activation, Relaxation, Speech + Actigraphy Case Studies Pilot Randomised Controlled Trial People with history of depression People with current depression
  10. 10. Pilot RCT Participants ❖ Participants with Major Depressive Disorder (SCID diagnosed) ❖ Use Help4Mood for 4 weeks ❖ Background measures include demographics and attitudes to computers ❖ (Pre/Post measures to establish change) ❖ Qualitative interviews at intake and debriefing for those randomized to Help4Mood
  11. 11. Participants and Usage Patterns ❖ 18 in Romania, 7 in Scotland, 2 in Spain (EU Project) ❖ 14 treatment as usual (age 42 years +/- 10), 13 Help4Mood (age 35 +/- 12) ❖ None formally tracked or measured their mood before, but some used introspection ❖ Half used it regularly, but that was not daily; instead, it was 2-3 times per week. Why? Appropriation
  12. 12. What is Going On With Me? The monitoring part helped me understand some things [. . .] sometimes I did not realize how I felt that day, how happy I was or how active I was. The system helped me observe these things and also control them. (RO14, female, 20–29)
  13. 13. Help4Mood as Coping [. . .] when I felt very upset, very low, I preferred longer sessions [. . .] because the session is pretty much focused on analyzing the thinking patterns of depressed people, and those recovering from depression. It gave me space to reflect on my own thoughts and feelings and gave me alternative ways that I could resonate with. (RO17, female, 30–39) The most important thing for me was those relaxation exercises and I think that it would have been very useful for the patient to have direct access to them. (RO03, female, 50–59)
  14. 14. It Doesn’t (Quite) Work This Way http://imgarcade.com/1/depressed-stick-figure/ Well-Designed Monitoring Self-Help Internet-Based Therapy + http://www.acog.org/About-ACOG/ACOG-Departments/Long-Acting-Reversible-Contraception https://www.osneybuyside.com/forget-big-data-just-collect-smart-data/ Protected Peer Support http://www.clipartsfree.net/small/3977-game-piece-group-clipart.html
  15. 15. It’s a complex adaptive system http://www.thebolditalic.com/articles/3609-the-stick-figure-guide-to-kicking-depression Individualised monitoring based on what person has & does Coping and getting better: • Twitter, exercise, kindness • Friends • Medications • GP Productive (!) self insight and reflection
  16. 16. The Story of Monitoring Work
  17. 17. The Chore of Monitoring If at all possible, it would be good not to have the same questions every day; or even if the questions are the same, the phrasing should be different. At some point it gets boring—I think this could be changed. (RO15, female, 30–39)
  18. 18. Self-Reflection is Hard Work “This wasn’t very pleasant. Because you don’t go to therapy every day. You wouldn’t go every day; you would go maybe once a week or two or three times maybe, but not every day. It’s a bit too much to use it every day.” (P01, Case Studies)
  19. 19. TRACKER what swimming weightlifting team sports self-report effort e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
  20. 20. TRACKER when worried well motivated for change not tracking during lazy days what swimming weightlifting team sports stigma self-report effort if there is a need e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
  21. 21. TRACKER when who job (e.g. nurses) allergies wrist anatomy forgetting to wear to bringto charge worried well techy motivated for change not tracking during lazy days what swimming weightlifting team sports style / fashion stigma self-report effort if there is a need e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
  22. 22. http://whitemenwearinggoogleglass.tumblr.com/image/51710586195 http://www.cio.com/article/2452759/health/wearable-techs-dilemma-too-much-data-not-enough-insight.html Apple Watch Hermès
  23. 23. TRACKER when who job (e.g. nurses) allergies wrist anatomy forgetting to wear to bringto charge worried well techy motivated for change not tracking during lazy days device breaks no longer holds charge lost / stolen what swimming weightlifting team sports no Internet style / fashion stigma self-report effort not synching properly if there is a need e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
  24. 24. http://thoughtstipsandtales.com/2014/11/06/fitbit-fun-ten-months-later/ http://thoughtstipsandtales.com/2015/03/05/fabulous-fitbit-accessory-to-keep-the-clasp-from-opening/
  25. 25. TRACKER when who forgetting is a function of - user characteristics - illness - external stress fit with identity device what detailed user modeldevice model connectivity model fit with activities effort required to track activity fit with ulterior need (why tracking?)
  26. 26. TRACKER when who forgetting is a function of - user characteristics - illness - external stress fit with identity device what detailed user modeldevice model connectivity model fit with activities effort required to track activity fit with ulterior need (why tracking?) All except for ulterior need and identity amenable to formal / quantitative modelling from appropriate discipline.
  27. 27. When looking at studies: People will do things for research, to benefit others, to be part of something bigger, and maybe also to earn some money, that they wouldn’t do for themselves.
  28. 28. The Story of Hidden Missing Data
  29. 29. Hiding in Electronic Health Records ❖ Data go dark because of quality issues in data entry and management (e.g., Chan et al., 2014, Medical Care Research and Review) ❖ People go to the doctor when worried about something, which increases likelihood of detection of other problems. ❖ So does diabetes really increase your cancer risk, or is your cancer more likely to be spotted in regular check ups? (e.g, Badrick and Renehan, 2014, Eur J Cancer)
  30. 30. We can only detect what is being observed. Does that mean regular screening and monitoring? What is the human cost of a false positive? What is the human cost of a false negative? What are the numbers needed to treat?
  31. 31. Questions? maria.wolters@ed.ac.uk http://www.thebolditalic.com/articles/3609-the-stick-figure-guide-to-kicking-depression Individualised monitoring based on what person has & does Coping and getting better: • Twitter, exercise, kindness • Friends • Medications • GP Productive (!) self insight and reflection

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