PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health
@article{Frost2009PatientsLikeMeTC,
title={PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health},
author={J. Frost and M. Massagli},
journal={Chronic Respiratory Disease},
year={2009},
volume={6},
pages={225 - 229}
}What happens when patients go online to not only discuss health and daily living but to share detailed health data? PatientsLikeMe© is an online platform where patients with life-altering conditions share structured information about symptoms, treatments, and outcomes, view individual and aggregated reports of these data, and discuss health and garner support on forums and through private messages. In this case study, we describe the components of this platform and how people with Amyotrophic… CONTINUE READING
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References
SHOWING 1-10 OF 15 REFERENCES
Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data
- Medicine
- Journal of medical Internet research
- 2008
- 448
- PDF
Integrated Personal Health Records: Transformative Tools for Consumer-Centric Care
- Medicine, Computer Science
- BMC Medical Informatics Decis. Mak.
- 2008
- 319
- PDF
White Paper: Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption
- Medicine, Computer Science
- J. Am. Medical Informatics Assoc.
- 2006
- 1,269
- PDF
Finding a new kind of knowledge on the HeartNET website.
- Sociology, Medicine
- Health information and libraries journal
- 2007
- 50
Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions
- Medicine
- BMJ : British Medical Journal
- 2004
- 1,122
- PDF
How women with breast cancer learn using interactive cancer communication systems.
- Medicine
- Health education research
- 2007
- 79
- PDF
Fostering empowerment in online support groups
- Psychology, Computer Science
- Comput. Hum. Behav.
- 2008
- 511
- PDF
The role of insightful disclosure in outcomes for women in peer‐directed breast cancer groups: a replication study
- Psychology, Medicine
- Psycho-oncology
- 2007
- 57
Online interaction. Effects of storytelling in an internet breast cancer support group.
- Medicine
- Psycho-oncology
- 2005
- 207
- PDF