Author(s):
- Piras, Enrico Maria
Abstract:
Despite the growing attention of researchers, healthcare managers and policy makers, data gathering and information management practices are largely untheorized areas. In this work are presented and discussed some early-stage conceptualizations: patient-generated health data, observations of daily living, quantified self and personal health information management. As I shall try to demonstrate, these labels are not neutral; rather, they underpin quite different perspectives with respect to health, patient–doctor relationship and the status of data.
Document:
https://doi.org/10.1177/1460458219833121
References:
| 1. | Lupton, D . Self-tracking cultures: towards a sociology of personal informatics. In: Proceedings of the 26th Australian computer-human interaction conference on designing futures: the future of design, Sydney, NSW, Australia, 2–5 December 2014, pp. 77–86. New York: ACM. Google Scholar |
| 2. | Lupton, D. The diverse domains of quantified selves: self-tracking modes and dataveillance. Econ Soc 2016; 45(1): 101–122. Google Scholar | Crossref | ISI |
| 3. | Piras, EM, Miele, F. Clinical self-tracking and monitoring technologies: negotiations in the ICT-mediated patient–provider relationship. Heal Soc Rev 2017; 26(1): 38–53. Google Scholar | Crossref |
| 4. | Shapiro, M, Johnston, D, Wald, J, et al. Patient-generated health data: white paper (prepared for the Office of the National Coordinator for Health IT by RTI International April 2012). Research Triangle Park, NC: RTI International, 2012. Google Scholar |
| 5. | Deering, MJ, Siminerio, E, Weinstein, S. Issue brief: patient-generated health data and health IT. Office of the National Coordinator for Health Information Technology, 20 December 2013, https://www.healthit.gov/sites/default/files/pghd_brief_final122013.pdf Google Scholar |
| 6. | National eHealth Collaborative . Patient-generated health information: technical expert panel. Final report, December 2013. Office of the National Coordinator for Health Information Technology, http://www.healthit.gov/sites/default/files/pghi_tep_finalreport121713.pdf Google Scholar |
| 7. | Petersen, C. Patient-generated health data: a pathway to enhanced long-term cancer survivorship. J Am Med Inform Assoc 2015; 23(3): 456–461. Google Scholar | Crossref | Medline |
| 8. | Petersen, C, DeMuro, P. Legal and regulatory considerations associated with use of patient-generated health data from social media and mobile health (mHealth) devices. Appl Clin Inform 2015; 6(1): 16. Google Scholar | Crossref | Medline |
| 9. | Brennan, PF, Casper, G. Observing health in everyday living: ODLs and the care-between-the-care. Pers Ubiquit Comput 2015; 19(1): 3–8. Google Scholar | Crossref |
| 10. | Brennan, PF, Downs, S, Casper, G. Project health design: rethinking the power and potential of personal health records. J Biomed Inform 2010; 43(Suppl. 5): S3–S5. Google Scholar | Crossref | Medline |
| 11. | Backonja, U, Kim, K, Casper, GR, et al. Observations of daily living: putting the ‘personal’ in personal health records. In: Proceedings of the 11th international congress on nursing informatics 2012, vol. 2012, Montreal, QC, Canada, 23–27 June. Bethesda, MD: American Medical Informatics Association https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3799183/ (accessed 25 Febuary 2019). Google Scholar |
| 12. | Cohen, DJ, Keller, SR, Hayes, GR, et al. Developing a model for understanding patient collection of observations of daily living: a qualitative meta-synthesis of the project health design program. Pers Ubiquit Comput 2015; 19(1): 91–102. Google Scholar | Crossref | Medline |
| 13. | Anwar, M . Leveraging online social media for capturing observations of daily living and ecological momentary assessment. In: Proceedings of the 2014 IEEE 15th international conference on information reuse and integration (IEEE IRI 2014), Redwood City, CA, 13 August, pp. 104–108. New York: IEEE. Google Scholar |
| 14. | http://quantifiedself.com/2011/03/what-is-the-quantified-self/ Google Scholar |
| 15. | Neuringer, A. Self-experimentation: a call for change. Behaviorism 1981; 9(1): 79–94. Google Scholar |
| 16. | http://quantifiedself.com/about/ Google Scholar |
| 17. | Gary Wolf , https://www.ted.com/talks/gary_wolf_the_quantified_self Google Scholar |
| 18. | Swan, M. The quantified self: fundamental disruption in big data science and biological discovery. Big Data 2013; 1(2): 85–99. Google Scholar | Crossref | Medline | ISI |
| 19. | Dolejsova, M, Kera, D, Storni, C, et al. Digital health & self-experimentation: design challenges & provocations. In: Proceedings of the 2017 CHI conference extended abstracts on human factors in computing systems, Denver, CO, 6–11 May 2017, pp. 510–517. New York: ACM. Google Scholar |
| 20. | Nafus, D, Sherman, J. Big data, big questions this one does not go up to 11: the quantified self movement as an alternative big data practice. Int J Commun 2014; 8: 11. Google Scholar | ISI |
| 21. | Barrett, MA, Humblet, O, Hiatt, RA, et al. Big data and disease prevention: from quantified self to quantified communities. Big Data 2013; 1(3): 168–175. Google Scholar | Crossref | Medline |
| 22. | Kallinikos, J, Tempini, N. Patient data as medical facts: social media practices as a foundation for medical knowledge creation. Inform Syst Res 2014; 25(4): 817–833. Google Scholar | Crossref |
| 23. | Civan, A, Skeels, MM, Stolyar, A, et al. Personal health information management: consumers’ perspectives. AMIA Annu Symp Proc 2006; 2006: 156–160. Google Scholar |
| 24. | Piras, EM, Zanutto, A. Prescriptions, x-rays and grocery lists: designing a personal health record to support (the invisible work of) health information management in the household. Comp Support Cooperat Work 2010; 19(6): 585–613. Google Scholar | Crossref |
| 25. | Moen, A, Brennan, PF. Health@ Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. J Am Med Inform Assoc 2005; 12(6): 648–656. Google Scholar | Crossref | Medline | ISI |
| 26. | Ancker, JS, Witteman, HO, Hafeez, B, et al. ‘You get reminded you’re a sick person’: personal data tracking and patients with multiple chronic conditions. J Med Internet Res 2015; 17(8): e202. Google Scholar | Crossref | Medline |
| 27. | Ancker, JS, Witteman, HO, Hafeez, B, et al. The invisible work of personal health information management among people with multiple chronic conditions: qualitative interview study among patients and providers. J Med Internet Res 2015; 17(6): e137. Google Scholar | Crossref | Medline |
| 28. | Pratt, W, Unruh, K, Civan, A, et al. Personal health information management. Commun ACM 2006; 49(1): 51–55. Google Scholar | Crossref | ISI |
| 29. | Piras, EM, Zanutto, A. One day it will be you who tells us doctors what to do! Exploring the ‘ personal’ of PHR in paediatric diabetes management. IT People 2014; 27(4): 421–439. Google Scholar | Crossref |
| 30. | Gherardi, S. Organizational knowledge: The texture of workplace learning. New York: Blackwell, 2006. Google Scholar |