ABSTRACT
Diagnostic self-tracking, the recording of personal information to diagnose or manage a health condition, is a common practice, especially for people with chronic conditions. Unfortunately, many who attempt diagnostic self tracking have trouble accomplishing their goals. People often lack knowledge and skills needed to design and conduct scientifically rigorous experiments, and current tools provide little support. To address these shortcomings and explore opportunities for diagnostic self tracking, we designed, developed, and evaluated a mobile app that applies a self experimentation framework to support patients suffering from irritable bowel syndrome (IBS) in identifying their personal food triggers. TummyTrials aids a person in designing, executing, and analyzing self experiments to evaluate whether a specific food triggers their symptoms. We examined the feasibility of this approach in a field study with 15 IBS patients, finding that participants could use the tool to reliably undergo a self-experiment. However, we also discovered an underlying tension between scientific validity and the lived experience of self experimentation. We discuss challenges of applying clinical research methods in everyday life, motivating a need for the design of self experimentation systems to balance rigor with the uncertainties of everyday life.
- Amin Ahsan Ali, Syed Monowar Hossain, Karen Hovsepian, Kurt Plarre, and Santosh Kumar. (2012). mPuff: Automated Detection of Cigarette Smoking Puffs from Respiration Measurements. Proceedings of the Conference on Information Processing in Sensor Networks (ISPN 2012), 269--280. http://doi.org/bwtk Google ScholarDigital Library
- Eric P.S. Baumer, Sherri Jean Katz, Jill E. Freeman, Phil Adams, Amy L. Gonzales, John Pollak, Daniela Retelny, Jeff Niederdeppe, Christine M. Olson, and Geri K. Gay. (2012). Prescriptive Persuasion and Open-Ended Social Awareness: Expanding the Design Space of Mobile Health. Proceedings of the ACM Conference on Computer Supported Cooperative Work (CSCW 2012), 475--484. http://doi.org/bbkm Google ScholarDigital Library
- Frank Bentley and Konrad Tollmar. (2013). The Power of Mobile Notifications to Increase Wellbeing Logging Behavior. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI 2013), 1095--1098. http://doi.org/f2zs59 Google ScholarDigital Library
- Hugh Beyer and Karen Holtzblatt. (1999). Contextual Design.Google Scholar
- Jessica R. Biesiekierski, Evan D. Newnham, Peter M. Irving, Jacqueline S. Barrett, Melissa Haines, James D. Doecke, Susan J. Shepherd, Jane G. Muir, and Peter R. Gibson. (2011). Gluten Causes Gastrointestinal Symptoms in Subjects without Celiac Disease: A Double-Blind Randomized Placebo-Controlled Trial. The American Journal of Gastroenterology, 106(3), 508--514. http://doi.org/bwtmGoogle ScholarCross Ref
- Jessica R. Biesiekierski, Simone L. Peters, Evan D. Newnham, Ourania Rosella, Jane G. Muir, and Peter R. Gibson. (2013). No Effects of Gluten in Patients with Self-Reported Non-Celiac Gluten Sensitivity after Dietary Reduction of Fermentable, Poorly Absorbed, Short-Chain Carbohydrates. Gastroenterology, 145(2), 320--328. http://doi.org/f2kqcxGoogle Scholar
- John Brooke. (1996). SUS: A Quick and Dirty Usability Scale. Usability Evaluation in Industry, 189(194), 4--7.Google Scholar
- Isis Bulté and Patrick Onghena. (2012). When the truth hits you between the eyes: A software tool for the visual analysis of single-case experimental data. Methodology, 8(3), 104--114. http://doi.org/bgx86gGoogle ScholarCross Ref
- Caroline Canavan, Joe West, and Timothy Card. (2014). The Epidemiology of Irritable Bowel Syndrome. Clinical epidemiology, 6, 71--80.Google Scholar
- William D Chey, Monthira Maneerattaporn, and Richard Saad. (2011). Pharmacologic and Complementary and Alternative Medicine Therapies for Irritable Bowel Syndrome. Gut and Liver, 5(3), 253--266. http://doi.org/cxgfcqGoogle ScholarCross Ref
- 1Eun Kyoung Choe, Nicole B. Lee, Bongshin Lee, Wanda Pratt, and Julie A. Kientz. (2014). Understanding Quantified-Selfers' Practices in Collecting and Exploring Personal Data. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2014), 1143--1152. http://doi.org/bbpd Google ScholarDigital Library
- Sunny Consolvo, David W. McDonald, Tammy Toscos, Mike Y. Chen, Jon E. Froehlich, Beverly L. Harrison, Predrag Klasnja, Anthony LaMarca, Louis LeGrand, Ryan Libby, Ian E. Smith, and James A. Landay. (2008). Activity Sensing in the Wild: A Field Trial of Ubifit Garden. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2008), 1797--1806. http://doi.org/fj37wd Google ScholarDigital Library
- Felicia Cordeiro, Elizabeth Bales, Erin Cherry, and James Fogarty. (2015). Rethinking the Mobile Food Journal: Exploring Opportunities for Lightweight Photo-Based Capture. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2015), 3207--3216. http://doi.org/bbkc Google ScholarDigital Library
- Felicia Cordeiro, Daniel A. Epstein, Edison Thomaz, Elizabeth Bales, Arvind K. Jagannathan, Gregory D. Abowd, and James Fogarty. (2015). Barriers and Negative Nudges: Exploring Challenges in Food Journaling. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2015), 1159--1162. http://doi.org/bbdt Google ScholarDigital Library
- Eugene S. Edgington and Patrick Onghena. (2007). Randomization Tests. CRC Press.Google Scholar
- Sigrid Elsenbruch. (2011). Abdominal Pain in Irritable Bowel Syndrome: A Review of Putative Psychological, Neural and Neuro-Immune Mechanisms. Brain, behavior, and immunity. http://doi.org/bmn48fGoogle Scholar
- Daniel A. Epstein, An Ping, James Fogarty, and Sean A. Munson. (2015). A Lived Informatics Model of Personal Informatics. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp 2015), 731--742. http://doi.org/bdsr Google ScholarDigital Library
- Fitbit. https://www.fitbit.com/Google Scholar
- Susannah Fox and Maeve Duggan. (2013). Tracking for Health. Pew Research Center's Internet & American Life Project, (October), 1--40.Google Scholar
- Carol Y. Francis, Julie Morris, and Peter J. Whorwell. (1997). The Irritable Bowel Severity Scoring System: A Simple Method of Monitoring Irritable Bowel Syndrome and its Progress. Alimentary Pharmacology & Therapeutics, 11(2), 395--402. http://doi.org/chgr63Google ScholarCross Ref
- Peter R. Gibson and Susan J. Shepherd. (2012). Food Choice as a Key Management Strategy for Functional Gastrointestinal Symptoms. The American Journal of Gastroenterology, 107(5), 657--666. http://doi.org/bwtnGoogle ScholarCross Ref
- Emma P. Halmos, Victoria A. Power, Susan J. Shepherd, Peter R. Gibson, and Jane G. Muir. (2014). A Diet Low in FODMAPs Reduces Symptoms of Irritable Bowel Syndrome. Gastroenterology, 146(1), 67--75. http://doi.org/f2n9rrGoogle ScholarCross Ref
- Lynsey R. Harris and Lesley Roberts. (2008). Treatments for Irritable Bowel Syndrome: Patients' Attitudes and Acceptability. BMC Complementary and Alternative Medicine, 8, 65. http://doi.org/d2p6vgGoogle ScholarCross Ref
- Steven C. Hayes. (1981). Single Case Experimental Design and Empirical Clinical Practice. Journal of Consulting and Clinical Psychology, 49(2), 193--211. http://doi.org/bqzkhfGoogle ScholarCross Ref
- Reetta Heinonen, Riitta Luoto, Pirjo Lindfors, and Clas-Håkan Nygård. (2012). Usability and Feasibility of Mobile Phone Diaries in an Experimental Physical Exercise Study. Telemedicine and e-Health, 18(2), 115--119. http://doi.org/fx8dgqGoogle ScholarCross Ref
- Margaret Heitkemper, Eric Carter, Vanessa Ameen, Kevin Olden, and Lin Cheng. (2002). Women with Irritable Bowel Syndrome: Differences in Patients' and Physicians' Perceptions. Gastroenterology Nursing, 25(5), 192--200.Google ScholarCross Ref
- Mieke Heyvaert and Patrick Onghena. (2014). Randomization Tests for Single-Case Experiments: State of the Art, State of the Science, and State of the Application. Journal of Contextual Behavioral Science, 3(1), 51--64. http://doi.org/bwtpGoogle ScholarCross Ref
- Anne E. Jamieson, Paula C. Fletcher, and Margaret A. Schneider. (2007). Seeking Control Through the Determination of Diet: A Qualitative Investigation of Women with Irritable Bowel Syndrome and Inflammatory Bowel Disease. Clinical Nurse Specialist, 21(3), 152--160. http://doi.org/c9nvp3Google ScholarCross Ref
- Jawbone UpBand. https://jawbone.com/upGoogle Scholar
- Mark P. Jensen, Wei Wang, Susan L. Potts, and Errol M. Gould. (2012). Reliability and Validity of Individual and Composite Recall Pain Measures in Patients with Cancer. Pain Medicine (USA), 13(10), 1284--1291. http://doi.org/bwtrGoogle ScholarCross Ref
- 3Mehul Jhaveri and Elizabeth Lee. (2007). Performance of Electronic Diaries in Diabetes Clinical Trials Measured through Overall Satisfaction of Site Coordinators. Journal of Diabetes Science and Technology, 1(4), 522--30. http://doi.org/bwtsGoogle ScholarCross Ref
- 3SungWoo Kahng, Kyong-Mee Chung, Katharine Gutshall, Steven C. Pitts, Joyce Kao, and Kelli Girolami. (2010). Consistent Visual Analyses of Intrasubject Data. Journal of Applied Behavior Analysis, 43(1), 35--45. http://doi.org/dswgqxGoogle ScholarCross Ref
- 3Sunanda V. Kane, Karen Sable, and Stephen B. Hanauer. (1998). The Menstrual Cycle and Its Effect on Inflammatory Bowel Disease and Irritable Bowel Syndrome: A Prevalence Study. The American journal of gastroenterology, 93(10), 1867--1872. http://doi.org/dmg8sxGoogle Scholar
- Ravi Karkar, Jasmine Zia, Roger Vilardaga, Sonali R. Mishra, James Fogarty, Sean A. Munson, and Julie A. Kientz. (2015). A Framework for Self-Experimentation in Personalized Health. Journal of the American Medical Informatics Association (JAMIA), 1--9. http://doi.org/bwttGoogle Scholar
- Matthew Kay, Eun Kyoung Choe, Jesse Shepherd, Benjamin Greenstein, Nathaniel F. Watson, Sunny Consolvo, and Julie A. Kientz. (2012). Lullaby: A Capture & Access System for Understanding the Sleep Environment. Proceedings of the ACM Conference on Ubiquitous Computing (UbiComp 2012), 226--234. http://doi.org/bwtv Google ScholarDigital Library
- Predrag Klasnja, Sunny Consolvo, Wanda Pratt, Health Informatics, and Intel Labs Seattle. (2011). How to Evaluate Technologies for Health Behavior Change in HCI Research. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI 2011), 3063--3072. http://doi.org/dzgdm6 Google ScholarDigital Library
- Thomas R. Kratochwill, John H. Hitchcock, Robert H. Horner, Joel R. Levin, Samuel L. Odom, David M. Rindskopf, and William R. Shadish. (2013). Single-Case Intervention Research Design Standards. Remedial and Special Education, 34(1), 26--38. http://doi.org/bwtwGoogle ScholarCross Ref
- Theodore Kueper, Dean Martinelli, Wayne Konetzki, Ralph W. Stamerjohn, and Jeanne B. Magill. (1995). Identification Of Problem Foods Using Food And Symptom Diaries. Otolaryngology - Head and Neck Surgery, 112(3), 415--420. http://doi.org/cps5rfGoogle ScholarCross Ref
- Uri Ladabaum, Erin Boyd, Wei K. Zhao, Ajitha Mannalithara, Annie Sharabidze, Gurkirpal Singh, Elaine Chung, and Theodore R. Levin. (2012). Diagnosis, Comorbidities, and Management of Irritable Bowel Syndrome in Patients in a Large Health Maintenance Organization. Clinical Gastroenterology and Hepatology, 10(1), 37--45. http://doi.org/c2rcf9Google ScholarCross Ref
- Larklife. http://lark.com/products/larklife/experienceGoogle Scholar
- Ian Li, Anind K. Dey, and Jodi Forlizzi. (2010). A Stage-Based Model of Personal Informatics Systems. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2010)., 557--566. http://doi.org/bh8zsb Google ScholarDigital Library
- Elizabeth O. Lillie, Bradley Patay, Joel Diamant, Brian Issell, Eric J. Topol, and Nicholas J. Schork. (2011). The N-of-1 Clinical Trial: The Ultimate Strategy For Individualizing Medicine? Personalized Medicine, 8(2), 161--173. http://doi.org/b6mzkpGoogle ScholarCross Ref
- James J. Lin, Lena Mamykina, Silvia Lindtner, Gregory Delajoux, and Henry B. Strub. (2006). Fish-n-Steps: Encouraging Physical Activity with an Interactive Computer Game. Ubiquitous Computing (UbiComp 2006), 261--278. http://doi.org/crcvd9 Google ScholarDigital Library
- Rebecca M. Lovell and Alexander C. Ford. (2012). Effect of Gender on Prevalence of Irritable Bowel Syndrome in the Community: Systematic Review and Meta-Analysis. The American Journal of Gastroenterology, 107, 991--1000. http://doi.org/bwtxGoogle ScholarCross Ref
- Daniel M. Maggin, Hariharan Swaminathan, Helen J. Rogers, Breda V. O'keeffe, George Sugai, and Robert H. Horner. (2011). A Generalized Least Squares Regression Approach For Computing Effect Sizes In Single-case Research: Application Examples. Journal of School Psychology, 49, 301--321. http://doi.org/d4nc3mGoogle ScholarCross Ref
- Lena Mamykina, Elizabeth Mynatt, Patricia Davidson, and Daniel Greenblatt. (2008). MAHI: Investigation of Social Scaffolding for Reflective Thinking in Diabetes Management. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI 2008), 477--486. http://doi.org/dck23q Google ScholarDigital Library
- Y. A. McKenzie, A. Alder, W. Anderson, A. Wills, L. Goddard, P. Gulia, E. Jankovich, P. Mutch, L. B. Reeves, A. Singer, and M. C. E. Lomer. (2012). British Dietetic Association Evidence-Based Guidelines for the Dietary Management of Irritable Bowel Syndrome in Adults. Journal of Human Nutrition and Dietetics 25, 260--274. http://doi.org/bwtzGoogle ScholarCross Ref
- Marcia L. Meldrum. (2000). A Brief History Of The Randomized Controlled Trial: From Oranges and Lemons to Gold Standard. Hematology/Oncology Clinics of North America, 14(4), 745--760. http://doi.org/fc9mpgGoogle ScholarCross Ref
- Debanjali Mitra, Keith L. Davis, and Robert W. Baran. (2011). All-Cause Health Care Charges among Managed Care Patients with Constipation and Comorbid Irritable Bowel Syndrome. Postgraduate Medicine, 123(3), 122--132. http://doi.org/fwcctzGoogle ScholarCross Ref
- Paul Moayyedi, Eamonn M. M. Quigley, Brian E. Lacy, Anthony J. Lembo, Yuri A. Saito, Lawrence R. Schiller, Edy E. Soffer, Brennan M. R. Spiegel, and Alexander C. Ford. (2015). The Effect of Dietary Intervention on Irritable Bowel Syndrome: A Systematic Review. Clinical and Translational Gastroenterology, 6, e107. http://doi.org/bwt2Google ScholarCross Ref
- Mariola Moeyaert, Maaike Ugille, John M. Ferron, S. Natasha Beretvas, and Wim Van den Noortgate. (2014). Three-level Analysis of Single-Case Experimental Data: Empirical Validation. The Journal of Experimental Education, 82(1), 1--21. http://doi.org/bwt3Google ScholarCross Ref
- Kristina W. Monsbakken, Per Olav Vandvik, and Per G. Farup. (2006). Perceived Food Intolerance in Subjects with Irritable Bowel Syndrome -- Etiology, Prevalence And Consequence. European Journal of Clinical Nutrition, 60(5), 667--72. http://doi.org/fqd4d9Google ScholarCross Ref
- Margaret Morris and Farzin Guilak. (2009). Mobile Heart Health: Project Highlight. IEEE Pervasive Computing, 8(2), 57--61. http://doi.org/fcwrgd Google ScholarDigital Library
- mySymptoms. http://skygazerlabs.com/wp/Google Scholar
- Daskalova Nediyana, Danaë Metaxa-Kakavouli, Adrienne Tran, Nicole Nugent, Julie Boergers, John McGeary, and Jeff Huang. (2016). SleepCoacher?: A Personalized Automated Self-Experimentation System for Sleep Recommendations. Proceedings of the ACM Symposium on User Interface Software and Technology (UIST 2016), 347--358. http://doi.org/bwt4 Google ScholarDigital Library
- Nike Fuelband. http://www.nike.com/us/en_us/c/nikeplus/nikefuelGoogle Scholar
- PACO: The Personal Analytics Companion. https://www.pacoapp.com/Google Scholar
- Olafur S. Palsson, William E. Whitehead, Miranda A. L. van Tilburg, Lin Chang, William Chey, Michael D. Crowell, Laurie Keefer, Anthony J. Lembo, Henry P. Parkman, Satish Sc Rao, Ami Sperber, Brennan Spiegel, Jan Tack, Stephen Vanner, Lynn S. Walker, Peter Whorwell, and Yunsheng Yang. (2016). Rome IV Diagnostic Questionnaires and Tables for Investigators and Clinicians. Gastroenterology, 150(6), 1481--1491. http://doi.org/bwt5Google ScholarCross Ref
- Richard I. Parker, Kimberly J. Vannest, and John L. Davis. (2011). Effect Size in Single-Case Research: A Review of Nine Nonoverlap Techniques. Behavior Modification, 35(4), 303--22. http://doi.org/dsdfs4Google ScholarCross Ref
- Elazar J. Pedhazur and Liora Pedhazur Schmelkin. (1991). Measurement, Design, And Analysis: An Integrated Approach. Erlbaum, New Jersey.Google Scholar
- Iris Posserud, Hans Strid, Stine Störsrud, Hans Törnblom, Ulla Svensson, Jan Tack, Lukas Van Oudenhove, and Magnus Simrén. (2013). Symptom Pattern Following a Meal Challenge Test in Patients with Irritable Bowel Syndrome and Healthy Controls. United European Gastroenterology Journal, 1(5), 358--67. http://doi.org/f25c23Google ScholarCross Ref
- Shireen L. Rizvi and Matthew K. Nock. (2008). Single-Case Experimental Designs For The Evaluation Of Treatments For Self-Injurious And Suicidal Behaviors. Suicide & life-threatening behavior, 38(5), 498--510. http://doi.org/dpcc9hGoogle Scholar
- John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers Chalmers. (2014). Personal Tracking as Lived Informatics. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2014), 1163--1172. http://doi.org/bbdz Google ScholarDigital Library
- Jeff Sauro. (2011). Measuring Usability with the System Usability Scale (SUS). http://www.measuringu.com/sus.phpGoogle Scholar
- SCRT Package - CRAN. http://cran.r-project.org/web/packages/glmnet/index.htmlGoogle Scholar
- William R. Shadish, Larry V. Hedges, and James E. Pustejovsky. (2013). An SPSS Macro for a d-Statistic for Single-Case Designs.Google Scholar
- Magnus Simrén, Agneta Månsson, Anna Maria Langkilde, Jan Svedlund, Hasse Abrahamsson, Ulf Bengtsson, and Einar S. Björnsson. (2001). Food-Related Gastrointestinal Symptoms in the Irritable Bowel Syndrome. Digestion, 63(2), 108--15. http://www.ncbi.nlm.nih.gov/pubmed/11244249Google ScholarCross Ref
- Heidi M. Staudacher, Kevin Whelan, Peter M. Irving, and Miranda C. E. Lomer. (2011). Comparison of Symptom Response Following Advice for a Diet Low in Fermentable Carbohydrates (FODMAPs) versus Standard Dietary Advice in Patients with Irritable Bowel Syndrome. Journal of Human Nutrition and Dietetics, 24(5), 487--495. http://doi.org/dhpg8hGoogle ScholarCross Ref
- Hyewon Suh, Nina Shahriaree, Eric B. Hekler, and Julie A. Kientz. (2016). Developing and Validating the User Burden Scale: A Tool for Assessing User Burden in Computing Systems. Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2016), 3988--3999. http://doi.org/bwt6 Google ScholarDigital Library
- Tiralist - ohmage. https://github.com/ohmage/trialist-front-endGoogle Scholar
- TummyTrends. https://itunes.apple.com/us/app/tummy-trends-constipation/id513358882?mt=8Google Scholar
Index Terms
- TummyTrials: A Feasibility Study of Using Self-Experimentation to Detect Individualized Food Triggers
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