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={Jeana Frost and Michael 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… 
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56 Citations
Highly Influential Citations
2
Background Citations
22
Methods Citations
4

56 Citations

Clinical Questions in Online Health Communities: The Case of "See your doctor" Threads

The findings showed that what was previously thought of as a solution-quality control through moderation-might not be best and that the community, in coordination with moderators, can provide critical help in addressing clinical questions and building constructive information sharing community environment.

Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians

Patients offer other patients substantial expertise that differs significantly from the expertise offered by health professionals, and the findings suggest that experienced patients do not necessarily serve as “amateur doctors” who offer more accessible but less comprehensive or detailed medical information.

Health-related quality of life outcomes of participants in a Montana-specific, online support community for people in Montana with inflammatory bowel disease

This study examined how individuals participating in a Montana-specific, online support community for those in Montana with IBD assess and describe their experiences within the community, and how they report that their experiences have affected their HRQOL in the areas of social support and illness knowledge.

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience to improve multidisciplinary ALS practice, and ultimately patient care.

Tell Me What I Don't Know--Making the Most of Social Health Forums

We describe a novel approach to helping patients learn about their condition using social health forums. We infer a patient's condition based on her clinical data, and assign her to a clinical state…

My Health: An Online Healthcare Social Network Inclusive for Elderly People

This work describes “My Health”, an OHSN developed by the research group, and assesses how three well-known OHSNs address accessibility guidelines, finding that conformance to guidelines does not ensures that the users will not have usage and interaction problems.

Alemtuzumab in Multiple Sclerosis: Lessons from Social Media in Enhancing Patient Care.

Health-care providers' reviews of these online sites allow insight into the real-world experiences of patients receiving alemtuzumab, with potential for modification of educational approaches by health-care professionals.

Healthcare and Big Data Management

  • Bairong Shen
  • Medicine
    Advances in Experimental Medicine and Biology
  • 2017
The conclusion is that the smart patient is attainable and he or she is not merely a patient but more importantly a captain and global manager of one’s own health management, a partner of medical practitioner, and also a supervisor of medical behavior.

A Distributed Collaborative Platform for Personal Health Profiles in Patient-Driven Health Social Network

These efforts to develop a core platform called Distributed Platform for Health Profiles (DPHP) that enables individuals or groups to control their personal health profiles and the proposed search model in DPHP are introduced.

Knowledge sharing in online health communities: A social exchange theory perspective

...

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

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White Paper: Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption

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How women with breast cancer learn using interactive cancer communication systems.

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Online interaction. Effects of storytelling in an internet breast cancer support group

The internet provides new ways of forming social relationships among people with breast cancer and is increasingly used for this purpose. This qualitative study, using ethnographic case‐study method,…