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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53 Citations
Highly Influential Citations
2
Background Citations
20
Methods Citations
4

53 Citations

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

TLDR
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

TLDR
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

TLDR
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

TLDR
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

TLDR
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.

TLDR
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
TLDR
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

TLDR
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.

Technology as a Bridge between Health Care Systems and Older Adults

TLDR
It is suggested that older adults with lower levels of health literacy stand to benefit the most from this technology, but they tend to have fewer cognitive, literacy, and other psychosocial resources needed to take advantage of the technology.
...

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

TLDR
This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management.

Integrated Personal Health Records: Transformative Tools for Consumer-Centric Care

TLDR
Only the integrated model has true transformative potential to strengthen consumers' ability to manage their own health care, and with some exceptions, the integrated PHR model is still a theoretical framework for consumer-centric health care.

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

TLDR
This paper summarizes the College Symposium discussions on PHR systems and provides definitions, system characteristics, technical architectures, benefits, barriers to adoption, and strategies for increasing adoption.

Finding a new kind of knowledge on the HeartNET website.

TLDR
It is suggested that, when anxious patients seek health-related information, for example in a library, they may benefit from being given contact points to communicate with others who find themselves in similar situations, and Internet-based social software (Web 2.0) can provide this kind of communication.

Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions

TLDR
No robust evidence exists of consumer led peer to peer communities, partly because most peer topeer communities have been evaluated only in conjunction with more complex interventions or involvement with health professionals.

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

TLDR
It is suggested that use of the information and interactive services independently contributed to perceived information competence, though the communication services, including both discussion group and ask an expert, did not.

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The role of insightful disclosure in outcomes for women in peer‐directed breast cancer groups: a replication study

TLDR
The findings, in this study, support Shaw et al.'s hypotheses that writing a higher percentage of insightful disclosure words will be associated with fewer BC concerns, better physical health, and few functional limitations.

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

TLDR
The results showed that the women were empowered by the exchanges of knowledge and experience within the support group, suggesting that internet support groups have important potential for the rehabilitation of cancer patients.

Safeguarding patient privacy in electronic healthcare in the USA: the legal view

TLDR
It is found that as Electronic Medical Records (EMRs) increase in scope and dissemination, privacy protections gradually decrease due to the shortcomings in the legal system, and how these will escalate when health information is transmitted over wireless networks.