ABSTRACT
Online health communities that engage the patient as a whole person attend to personal and medical needs in a holistic manner. Whether current communities structure interaction between health professionals and patients to address the whole person is an open question. To gain insights into this question, we examined a sample of online patient communities to understand health professionals' involvement in bringing in medical advice into peer-patient conversations. We found the communities fall short in supporting the whole person, because (1) patient expertise and clinical expertise generated by health professionals are shared separately, and (2) patients' quantified data are separate from narrative experiences. Such separation in the design of these systems can lead to limitations in addressing patients' interwoven medical and personal concerns. We discuss dilemmas and design implications for supporting the whole person in online patient communities.
- Anderson, R. M., Funnell, M. M., Butler, P. M., Arnold, M. S., Fitzgerald, J. T., and Feste, C. C. Patient empowerment. Results of a randomized controlled trial. Diabetes Care 18, 7 (1995), 943.Google ScholarCross Ref
- Brown, J., Weston, W., and Stewart, M. The first component: exploring both the disease and the illness experience. Patient-centered Medicine. Transforming the Clinical Method 2, 3--52.Google Scholar
- Cuijpers, P., Donker, T., van Straten, A., Li, J., and Andersson, G. Is guided self-help as effective as face-to-face psychotherapy for depression and anxiety disorders? A systematic review and meta-analysis of comparative outcome studies. Psychological medicine 40, 12 (2010), 1943--57.Google Scholar
- Frost, J. H. and Massagli, M. P. Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another's data. Journal of Medical Internet Research 10, 3 (2008), e15.Google ScholarCross Ref
- Hartzler, A. and Pratt, W. Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians. JMIR 13, 3 (2011), e62.Google Scholar
- Huh, J. Collaborative Help for Individualized Problems: Learning from the MythTV User Community and Diabetes Patient Support Groups. 2011.Google Scholar
- Kleinman, A., Eisenberg, L., and Good, B. Culture, Illness, and Care: Clinical Lessons from Anthropologic and Cross-Cultural Research. Ann Intern Med 88, 2 (1978), 251--258.Google ScholarCross Ref
- Levenstein, J. H., McCracken, E. C., McWhinney, I. R., Stewart, M. A., and Brown, J. B. The Patient-Centred Clinical Method. 1. A Model for the Doctor-Patient Interaction in Family Medicine. Family Practice 3, 1 (1986), 24--30.Google ScholarCross Ref
- Lindsay, S. and Smith, S. The health impact of an online heart disease support group: a comparison of moderated versus unmoderated support. Health Education Research 24, 4 (2009), 646--654.Google ScholarCross Ref
- Lorig, K., Ritter, P. L., Laurent, D. D., et al. Online diabetes self-management program: a randomized study. Diabetes care 33, 6 (2010), 1275--81.Google Scholar
- Plaisant, C., Mushlin, R., Snyder, A., Li, J., Heller, D., and Shneiderman, B. LifeLines: using visualization to enhance navigation and analysis of patient records. AMIA, (1998), 76.Google Scholar
- Preece, J. Empathic communities: Reaching out across the web. Interactions 5, 2 (1998), 32--43. Google ScholarDigital Library
- Smith, B. K., Frost, J., Albayrak, M., and Sudhakar, R. Integrating glucometers and digital photography as experience capture tools to enhance patient understanding and communication of diabetes self-management practices. Personal and Ubiquitous Computing 11, 4 (2006), 273--286. Google ScholarDigital Library
- Strauss, A. L. and Corbin, J. Basics of qualitative research: Grounded theory procedures and techniques. Sage Newbury Park, CA, 1990.Google Scholar
- Willett, W., Heer, J., Hellerstein, J., and Agrawala, M. CommentSpace. Proceedings of the 2011 annual conference on Human factors in computing systems CHI '11, ACM Press (2011), 3131. Google ScholarDigital Library
- Wolf, G. Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365. Wired Magazine, 2009.Google Scholar
Index Terms
- Tackling dilemmas in supporting 'the whole person' in online patient communities
Recommendations
Beyond the Patient Portal: Supporting Needs of Hospitalized Patients
CHI '19: Proceedings of the 2019 CHI Conference on Human Factors in Computing SystemsAlthough patient portals-technologies that give patients access to their health information-are recognized as key to increasing patient engagement, we have a limited understanding of how these technologies should be designed to meet the needs of ...
Digital health communities: The effect of their motivation mechanisms
Health-related online social networks are starting to play a role in many people's daily lives by enabling them to monitor their diet and motivating them to change their lifestyles. These social networks provide different motivation mechanisms. However, ...
Supporting patient-provider communication and engagement with personal informatics data
UbiComp '17: Proceedings of the 2017 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2017 ACM International Symposium on Wearable ComputersPersonal informatics data are prevalent in clinical care today. My research builds an understanding patient and provider needs and challenges to advance the design of personal informatics systems and theoretical understandings of patient-provider ...
Comments