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}
}
  • J. Frost, M. Massagli
  • Published 2009
  • Medicine
  • Chronic Respiratory Disease
  • 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
    47 Citations

    Topics from this paper

    Clinical Questions in Online Health Communities: The Case of "See your doctor" Threads
    • Jina Huh
    • Psychology, Computer Science
    • CSCW
    • 2015
    • 40
    Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians
    • 165
    • PDF
    Tell Me What I Don't Know--Making the Most of Social Health Forums
    • J. Rolia, Wen Yao, +4 authors S. Sabbella
    • Medicine, Computer Science
    • 2013 IEEE International Conference on Healthcare Informatics
    • 2013
    • 9
    • PDF
    My Health: An Online Healthcare Social Network Inclusive for Elderly People
    • 1
    • Highly Influenced
    Healthcare and Big Data Management
    • Bairong Shen
    • Business
    • Advances in Experimental Medicine and Biology
    • 2017
    A Distributed Collaborative Platform for Personal Health Profiles in Patient-Driven Health Social Network
    • 9
    • PDF

    References

    SHOWING 1-10 OF 15 REFERENCES
    Integrated Personal Health Records: Transformative Tools for Consumer-Centric Care
    • 319
    • PDF
    White Paper: Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption
    • 1,269
    • PDF
    Finding a new kind of knowledge on the HeartNET website.
    • 50
    How women with breast cancer learn using interactive cancer communication systems.
    • 79
    • PDF
    Fostering empowerment in online support groups
    • 511
    • PDF