“It’s Not Just Technology, It’s People”: Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management
Open accessPublished version of a preprint
Abstract
BACKGROUND: For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. OBJECTIVE: To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. METHODS: As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. RESULTS: We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. CONCLUSIONS: The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Our research population's heterogeneity did not permit a thorough comparison with other studies in the literature as they involved more homogeneous samples.
“Our research population’s heterogeneity did not permit a thorough comparison with other studies in the literature as they involved more homogeneous samples [18-20].”
From Perceptions About Technologies That Help Community-Dwelling Older Adults Remain at Home: Qualitative Study (2020) · cites this paper as [18]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
The reflective practitioner: How professionals think in action
Bogumil, R. (1985) · Proceedings of the IEEE · doi:10.1109/proc.1985.13210 · Cited by 18,243 · see citing works
(2005) · Medical Entomology and Zoology · Cited by 3,609 · see citing works
Patient Self-management of Chronic Disease in Primary Care
Bodenheimer, T. (2002) · JAMA · doi:10.1001/jama.288.19.2469 · Cited by 3,598 · cited 1× · see citing works
“…must engage effective management strategies, including tracking behaviors, biometrics, and symptoms, within the constraints of their everyday lives [4,5], and they are turning to technology solutions in increasing numbers [6] (we refer to people rather than patients throughout this paper to…”
Organizing Care for Patients with Chronic Illness
Wagner, E. H., Austin, B. T., & Korff, M. V. (1996) · The Milbank Quarterly · doi:10.2307/3350391 · Cited by 2,877 · see citing works
Evidence on the Chronic Care Model in the new millennium
Coleman, K., Austin, B. T., Brach, C., & Wagner, E. H. (2009) · Health Affairs · doi:10.1377/hlthaff.28.1.75 · Cited by 1,606 · see citing works
A stage-based model of personal informatics systems
Li, I., Dey, A., & Forlizzi, J. (2010) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/1753326.1753409 · Cited by 1,114 · see citing works
The role of patient care teams in chronic disease management
Wagner, E. H. (2000) · BMJ · doi:10.1136/bmj.320.7234.569 · Cited by 1,048 · see citing works
Mental Health Smartphone Apps: Review and Evidence-Based Recommendations for Future Developments
Bakker, D., Kazantzis, N., Rickwood, D., & Rickard, N. (2016) · JMIR Mental Health · doi:10.2196/mental.4984 · Cited by 886 · see citing works
Multiple Chronic Conditions Among US Adults: A 2012 Update
Ward, B. W., Schiller, J. S., & Goodman, R. A. (2014) · Preventing Chronic Disease · doi:10.5888/pcd11.130389 · Cited by 848 · see citing works
Understanding quantified-selfers' practices in collecting and exploring personal data
Choe, E. K., Lee, N. B., Lee, B., Pratt, W., & Kientz, J. A. (2014) · Proceedings of the SIGCHI Conference on Human Factors in Computing Systems · doi:10.1145/2556288.2557372 · Cited by 766 · see citing works
Self-citationWhitehead, L., & Seaton, P. (2016) · Journal of Medical Internet Research · doi:10.2196/jmir.4883 · Cited by 743 · see citing works
Swan, M. (2009) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph6020492 · Cited by 730 · see citing works
Managing chronic illness at home: Three lines of work
Corbin, J., & Strauss, A. (1985) · Qualitative Sociology · doi:10.1007/bf00989485 · Cited by 710 · see citing works
Personal tracking as lived informatics
Rooksby, J., Rost, M., Morrison, A., & Chalmers, M. (2014) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/2556288.2557039 · Cited by 671 · see citing works
Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease
Holman, H. R., & Lorig, K. R. (2004) · Public Health Reports · doi:10.1016/j.phr.2004.04.002 · Cited by 583 · see citing works
A lived informatics model of personal informatics
Epstein, D. A., Ping, A., Fogarty, J. A., & Munson, S. A. (2015) · ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp) · doi:10.1145/2750858.2804250 · Cited by 509 · see citing works
Self-citationMAHI: investigation of social scaffolding for reflective thinking in diabetes management
Mamykina, L., Mynatt, E., Davidson, P., & Greenblatt, D. (2008) · Proceedings of the SIGCHI Conference on Human Factors in Computing Systems · doi:10.1145/1357054.1357131 · Cited by 355 · see citing works
Fit4life: the design of a persuasive technology promoting healthy behavior and ideal weight
Purpura, S., Schwanda, V., Williams, K., Stubler, W., & Sengers, P. (2011) · Proceedings of the SIGCHI Conference on Human Factors in Computing Systems · doi:10.1145/1978942.1979003 · Cited by 264 · see citing works
Beyond Abandonment to Next Steps
Epstein, D. A., Caraway, M., Johnston, C., Ping, A., Fogarty, J. A., & Munson, S. A. (2016) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/2858036.2858045 · Cited by 256 · see citing works
Self-citationSanto, K., Richtering, S. S., Chalmers, J. P., Thiagalingam, A., Chow, C. K., & Redfern, J. (2016) · JMIR mhealth and uhealth · doi:10.2196/mhealth.6742 · Cited by 256 · see citing works
Cordeiro, F., Epstein, D. A., Thomaz, E., Bales, E., Jagannathan, A. K., Abowd, G. D., & Fogarty, J. A. (2015) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/2702123.2702155 · Cited by 251 · see citing works
Creber, R. M., Maurer, M. S., Turchioe, M. R., Hiraldo, G., Hickey, K. T., & Iribarren, S. (2016) · JMIR mhealth and uhealth · doi:10.2196/mhealth.5882 · Cited by 250 · see citing works
Chung, C.-F., Dew, K., Cole, A., Zia, J., Fogarty, J., Kientz, J. A., & Munson, S. A. (2016) · Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing · doi:10.1145/2818048.2819926 · Cited by 222 · see citing works
Self-citationFrom Personal Informatics to Family Informatics
Pina, L. R., Sien, S.-W., Ward, T. M., Yip, J. C., Munson, S. A., Fogarty, J. A., & Kientz, J. A. (2017) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2998181.2998362 · Cited by 204 · see citing works
Self-citationMin, J.-K., Doryab, A., Wiese, J., Amini, S., Zimmerman, J., & Hong, J. (2014) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/2556288.2557220 · Cited by 197 · see citing works
Personal Informatics in Interpersonal Contexts
Murnane, E. L., Walker, T., Tench, B., Voida, S., & Snyder, J. (2018) · Proceedings of the ACM on Human-Computer Interaction · doi:10.1145/3274396 · Cited by 196 · see citing works
Valdez, R. S., Holden, R. J., Novak, L. L., & Veinot, T. C. (2014) · Journal of the American Medical Informatics Association · doi:10.1136/amiajnl-2014-002826 · Cited by 195 · see citing works
When Personal Tracking Becomes Social
Chung, C.-F., Agapie, E., Schroeder, J., Mishra, S. R., Fogarty, J. A., & Munson, S. A. (2017) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/3025453.3025747 · Cited by 190 · see citing works
Self-citationCatalyzing social support for breast cancer patients
Skeels, M. M., Unruh, K. T., Powell, C., & Pratt, W. (2010) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/1753326.1753353 · Cited by 163 · see citing works
Self-citationSmartphone Applications to Support Sleep Self-Management: Review and Evaluation
Choi, Y. K., Demiris, G., Lin, S., Iribarren, S., Landis, C. A., Thompson, H. J., McCurry, S. M., Heitkemper, M. M., & Ward, T. M. (2018) · Journal of Clinical Sleep Medicine · doi:10.5664/jcsm.7396 · Cited by 157 · see citing works
Tinschert, P., Jakob, R., Barata, F., Kramer, J.-N., & Kowatsch, T. (2017) · JMIR mHealth and uHealth · doi:10.2196/mhealth.7177 · Cited by 156 · see citing works
Grainger, R., Townsley, H., White, B., Langlotz, T., & Taylor, W. J. (2017) · JMIR mhealth and uhealth · doi:10.2196/mhealth.6956 · Cited by 146 · see citing works
Schroeder, J., Hoffswell, J., Chung, C.-F., Fogarty, J. A., Munson, S. A., & Zia, J. K. (2017) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2998181.2998276 · Cited by 107 · see citing works
Self-citationCare Partners and Online Patient Portals
Sarkar, U., & Bates, D. W. (2014) · JAMA · doi:10.1001/jama.2013.285825 · Cited by 99 · see citing works
Self-Tracking for Fertility Care
Figueiredo, M. C., Caldeira, C. M., Reynolds, T. L., Victory, S., Zheng, K., & Chen, Y. (2017) · Proceedings of the ACM on Human-Computer Interaction · doi:10.1145/3134671 · Cited by 98 · see citing works
From "nobody cares" to "way to go!"
Epstein, D. A., Jacobson, B. H., Bales, E., McDonald, D. W., & Munson, S. A. (2015) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2675133.2675135 · Cited by 96 · see citing works
Self-citationUnruh, K. T., & Pratt, W. (2008) · Ethnographic Praxis in Industry Conference Proceedings · doi:10.1111/j.1559-8918.2008.tb00093.x · Cited by 93 · see citing works
Self-citationMamykina, L., Heitkemper, E., Smaldone, A. M., Kukafka, R., Cole-Lewis, H. J., Davidson, P. G., Mynatt, E. D., Cassells, A. N., Tobin, J. N., & Hripcsak, G. M. (2017) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2017.09.013 · Cited by 79 · see citing works
Latulipe, C., Quandt, S. A., Melius, K., Bertoni, A. G., MILLER, D. P., Smith, D., & Arcury, T. A. (2018) · Journal of Medical Internet Research · doi:10.2196/10524 · Cited by 71 · see citing works
Veinot, T. C., Meadowbrooke, C. C., Loveluck, J., et al. (2013) · Journal of Medical Internet Research · doi:10.2196/jmir.2370 · Cited by 70 · see citing works
Steps, Choices and Moral Accounting
Gorm, N., & Shklovski, I. (2016) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2818048.2819944 · Cited by 63 · see citing works
Verloo, H., Kampel, T., Vidal, N., & Pereira, F. (2020) · Journal of Medical Internet Research · doi:10.2196/17930 · Cited by 57 · see citing works
The Chronic Care Model and Technological Research and Innovation: A Scoping Review at the Crossroads
Gammon, D., Berntsen, G., Koricho, A. T., Sygna, K., & Ruland, C. M. (2015) · Journal of Medical Internet Research · doi:10.2196/jmir.3547 · Cited by 55 · see citing works
Security and Privacy Risks Associated With Adult Patient Portal Accounts in US Hospitals
Latulipe, C., Mazumder, S. F., Wilson, R. K. W., Talton, J. W., Bertoni, A. G., Quandt, S. A., Arcury, T. A., & MILLER, D. P. (2020) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2020.0515 · Cited by 54 · see citing works
Zulman, D. M., Piette, J. D., Jenchura, E. C., Asch, S. M., & Rosland, A.-M. M. (2013) · Journal of Medical Internet Research · doi:10.2196/jmir.2472 · Cited by 53 · see citing works
Valdez, R. S., & Brennan, P. F. (2015) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2015.01.014 · Cited by 53 · see citing works
Weight and Symptom Diary for Self-monitoring in Heart Failure Clinic Patients
Eastwood, C. A., Travis, L. L., Morgenstern, T. T., & Donaho, E. K. (2007) · The Journal of Cardiovascular Nursing · doi:10.1097/01.jcn.0000287027.49628.a7 · Cited by 53 · see citing works
Supporting Collaborative Health Tracking in the Hospital
Mishra, S. R., Miller, A., Haldar, S., Khelifi, M., Eschler, J., Elera, R. G., Pollack, A. H., & Pratt, W. (2018) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/3173574.3174224 · Cited by 53 · see citing works
Self-citationPaton, C., Hansen, M. M., Fernández-Luque, L., & Lau, A. Y. S. (2012) · PubMed · Cited by 48 · see citing works
Baos, V., Ester, F., Castellanos, A., Nocea, G., Caloto, M. T., Gerth, W. C., & on behalf of The I-Max Study Group (2005) · International Journal of Clinical Practice · doi:10.1111/j.1742-1241.2005.00469.x · Cited by 39 · see citing works
Probing the benefits of real-time tracking during cancer care.
Patel, R. A., Klasnja, P., Hartzler, A. L., Unruh, K. T., & Pratt, W. (2012) · Europe PMC (PubMed Central) · Cited by 39 · see citing works
Self-citationToward Helping Users in Assessing the Trustworthiness of User-Generated Reviews
Sherwani, D., & Stumpf, S. (2014) · Electronic workshops in computing · doi:10.14236/ewic/hci2014.16 · Cited by 39 · see citing works
Simplifying Mobile Phone Food Diaries
Andrew, A. H., Borriello, G., & Fogarty, J. A. (2013) · Proceedings of the ICTs for improving Patients Rehabilitation Research Techniques · doi:10.4108/icst.pervasivehealth.2013.252101 · Cited by 38 · see citing works
Shared Calendars for Home Health Management
Eschler, J., Kendall, L., O'Leary, K., Vizer, L. M., Lozano, P., McClure, J. B., Pratt, W., & Ralston, J. D. (2015) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2675133.2675168 · Cited by 34 · see citing works
Self-citationKaufman, N., & Patnoe-Woodley, P. D. (2011) · Journal of Diabetes Science and Technology · doi:10.1177/193229681100500335 · Cited by 19 · see citing works
Online communication and support for cancer patients: a relationship-centric design framework.
Weiss, J. B., & Lorenzi, N. M. (2005) · Europe PMC (PubMed Central) · Cited by 14 · see citing works
Grande, S. W., & Sherman, L. D. (2018) · Journal of Medical Internet Research · doi:10.2196/jmir.9434 · Cited by 14 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- [24]MacLeod H Tang A Carpendale S Personal informatics in chronic illness management Proceedings of Graphics Interface 2013 2013 Graphics Interface 2013 May 29-31, 2013 Regina, SK, Canada Toronto, ON, Canada Canadian Information Processing Society
- [48]Holtzblatt K Beyer H Contextual Design: Design for Life. 2nd Edition 2017 12 14 Amsterdam Morgan Kaufmann
Cited by
Sorted by citations
Andersen, T. O., Langstrup, H., & Lomborg, S. (2020) · Journal of Medical Internet Research · doi:10.2196/15873 · Cited by 65 · see citing works
Verloo, H., Kampel, T., Vidal, N., & Pereira, F. (2020) · Journal of Medical Internet Research · doi:10.2196/17930 · Cited by 57 · see citing works
- Authors
- Vizer, L. M., Eschler, J., Koo, B. M., Ralston, J., Pratt, W., & Munson, S.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- Northwestern University (US)
- Kaiser Permanente (US)
- University of Washington (US)
- Corresponding author
- Vizer, Lisa M
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2019-04-29
- Volume
- 21
- Issue
- 4
- Pages
- e10830
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC6658298
- OpenAlex
- W2916596198
- Cited by
- 39
- References
- 57
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 5 · 2023: 4 · 2022: 10 · 2021: 2 · 2020: 8 · 2019: 1
- FWCI
- 7.15
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health (UL1TR002489)
- Agency for Healthcare Research and Quality (R01HS021590)
- U.S. National Library of Medicine (T15LM007442)
- National Center for Advancing Translational Sciences
- Topics
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Physical Sciences › Computer Science › Human-Computer Interaction › Innovative Human-Technology Interaction
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Keywords
- chronic disease management, conceptual model, informal caregivers, provider communication, technology design
- MeSH terms
- Patient Reported Outcome Measures, Adult, Chronic Disease, Female, Humans, Male, Medical Informatics, Middle Aged, Internet, Information Seeking Behavior
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
