The Hidden Stories Behind Missing Data
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The document discusses the concept of missing data in various contexts, particularly focusing on mental health monitoring through the help4mood project. It highlights the importance of understanding and addressing the reasons behind missing data and the impact on data analysis and visualizations. Additionally, it examines user experiences and challenges with self-monitoring and data collection methods in relation to mental health management.
![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)](https://image.slidesharecdn.com/designinformaticssepttalk-160922175351/85/The-Hidden-Stories-Behind-Missing-Data-12-320.jpg)
![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)](https://image.slidesharecdn.com/designinformaticssepttalk-160922175351/85/The-Hidden-Stories-Behind-Missing-Data-13-320.jpg)
The Hidden Stories Behind Missing Data
- 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. 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. 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. 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. The Appropriation of Help4Mood
- 6. depressioncomix.tumblr.com Depression is a change relative to an individual baseline
- 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. 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. 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. 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. 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. 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. 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. 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. 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. The Story of Monitoring Work
- 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. 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. TRACKER what swimming weightlifting team sports self-report effort e.g., Rooksby et al., CHI 2014; Lazar et al., CHI 2015
- 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. 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
- 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
- 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. 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. 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. The Story of Hidden Missing Data
- 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. 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. 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