Maia L. Jacobs
ABSTRACT
As technologies such as personal health records and symptom trackers become more common, we are seeing an increase in patients actively engaging in health tracking behaviors. Patient collected data can provide valuable insight for healthcare providers, particularly in the area of breast cancer. Thus far, little work has examined whether the health information that patients are willing to track and share aligns with the information needs of healthcare providers. Our work provides a comparison between the health information sharing preferences of breast cancer patients, doctors and navigators. We identify discrepancies between stakeholders' preferences, such as patients' hesitation to share feelings of loneliness, signifying where technology can play an important role in helping patients prioritize the health information shared with providers. We present design implications from this work to guide the development of future health information sharing tools that consider the differing needs of healthcare stakeholders.
- Benjamin, A., Birnholtz, J., Baecker, R., Gromala, D., and Furlan, A. Impression Management Work: How Seniors With Chronic Pain Address Disruptions in Their Interactions. CSCW '12, (2012), 799--808. Google Scholar
Digital Library
- Berry, D.L. Patient-reported symptoms and quality of life integrated into clinical cancer care. Seminars in oncology nursing 27, 3 (2011), 203--210.Google Scholar
- Chen, Y., Hall, B., and Xu, H. Privacy management in dynamic groups: Understanding information privacy in medical practices. CSCW '13, (2013), 541--552. Google ScholarDigital Library
- Civan, A., Mcdonald, D.W., Unruh, K.T., and Pratt, W. Locating Patient Expertise in Everyday Life. Group '09, (2009), 291--300. Google ScholarDigital Library
- Consolvo, S., Smith, I.E., Matthews, T., Lamarca, A., and Tabert, J. Location Disclosure to Social Relations: Why, When, & What People Want to Share. CHI '05, (2005), 81--90. Google ScholarDigital Library
- Ferguson, T. Online patient-helpers and physicians working together: a new partnership for high quality health care. BMJ (Clinical research ed.) 321, 7269 (2000), 1129--32.Google Scholar
- Hayes, G., Abowd, G., Davis, J., Blount, M., Ebling, M., and Mynatt, E.D. Opportunities for pervasive computing in chronic cancer care. Pervasive Computing, (2008), 262--279. Google ScholarDigital Library
- Jacobs, M., Clawson, J., and Mynatt, E. My Journey Compass: A Preliminary Investigation of a Mobile Tool for Cancer Patients. CHI '14, (2014). Google ScholarDigital Library
- Jacobs, M., Clawson, J., and Mynatt, E.D. Cancer Navigation: Opportunities and Challenges for Facilitating the Breast Cancer Journey. CSCW '14, (2014), 1467--1478. Google ScholarDigital Library
- Karlson, A.K., Brush, A.J.B., and Schechter, S. Can I borrow your phone? Understanding concerns when sharing mobile phones. CHI '09, (2009), 1647--1650. Google ScholarDigital Library
- Klasnja, P., Hartzler, A., Powell, C., and Pratt, W. Supporting cancer patients' unanchored health information management with mobile technology. AMIA 2011, (2011), 732--741.Google Scholar
- Mynatt, E.D., Rowan, J., Jacobs, A., and Craighill, S. Digital Family Portraits: Supporting Peace of Mind for Extended Family Members. CHI '01, (2001), 333--340. Google ScholarDigital Library
- Ong, L.M., De Haes, J.C., Hoos, a M., and Lammes, F.B. Doctor-patient communication: a review of the literature. Social science & medicine 40, 7 (1995), 903--18.Google Scholar
- O'Kane, A.A., Mentis, H.M., and Thereska, E. NonStatic nature of patient consent: Shifting privacy perspectives in health information sharing. CSCW '13, (2013), 553--562. Google ScholarDigital Library
- Patel, R. a, Klasnja, P., Hartzler, A., Unruh, K.T., and Pratt, W. Probing the benefits of real-time tracking during cancer care. AMIA '12, (2012), 1340--9.Google Scholar
- Prasad, A., Sorber, J., Stablein, T., Anthony, D., and Kotz, D. Understanding sharing preferences and behavior for mHealth devices. WPES '12, (2012), 117--128. Google ScholarDigital Library
- Pratt, W., Unruh, K., Civan, A., and Skeels, M. Personal health information management. Communications of the ACM 49, 1 (2006), 51--55. Google ScholarDigital Library
- Singh, S., Cabraal, A., Demosthenous, C., and Furlong, M. Password Sharing: Implications for Security Design Based on Social Practice. CHI '07, (2007), 895--904. Google ScholarDigital Library
- Skeels, M.M., Unruh, K.T., Powell, C., and Pratt, W. Catalyzing Social Support for Breast Cancer Patients. CHI '10, (2010), 173--182. Google ScholarDigital Library
- Skeels, M.M., Unruh, K.T., Powell, C., and Pratt, W. Catalyzing Social Support for Breast Cancer Patients. CHI '10, (2010), 173--182. Google ScholarDigital Library
- Slevin, M.L., Plant, H., Lynch, D., Drinkwater, J., and Gregory, W.M. Who should measure quality of life, the doctor or the patient? British journal of cancer 57, 1 (1988), 109--12.Google Scholar
- Street, R.L., Makoul, G., Arora, N.K., and Epstein, R.M. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient education and counseling 74, 3 (2009), 295--301.Google Scholar
- Tang, P.C., Ash, J.S., Bates, D.W., Overhage, J.M., and Sands, D.Z. Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA 13, 2 (2006), 121--127.Google Scholar
- Witry, M.J., Doucette, W.R., Daly, J.M., Levy, B.T., and Chrischilles, E. a. Family physician perceptions of personal health records. American Health Information Management Association (AHIMA) 7, (2010).Google Scholar
Index Terms
- Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators
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