Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

By J. Frost, M. Massagli. Journal of Medical Internet Research, 2008

549 citations recorded by the source corpus.

Background This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions Few studies examine the use of personal health information by patients themselves. 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. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

Subfields: General Health Professions, Neurology

View Paper: https://www.semanticscholar.org/paper/429ebd69c3ab69805671e7896c3bbff23e428c3d

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In General Health Professions

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Citations in the corpus

Personal Health Records: A Systematic Literature Review (2017, unknown): “Journal JMIRb Frost and Massagli, 2008 [38] A03”
Features of Mobile Diabetes Applications: Review of the Literature and Analysis of Current Applications Compared Against Evidence-Based Guidelines (2011, background): “Chen’s findings underscore the importance of individuality and the need for tailored social interactions, which resonate with the concept of “PatientsLikeMe” [33,34], which has recently received enormous attention.”
Sharing Health Data for Better Outcomes on PatientsLikeMe (2010, methodology): “Treatment Decisions The PatientsLikeMe site has been described previously [22].”
Reviewing social media use by clinicians (2012, background): “Examples include emergency broadcasts during natural disasters,(9) access to free (but often questionable)(10) 11 medical information online, and virtual patient communities.(12) Impact has also been felt internally as a new generation of clinicians enters training with ingrained communication habit”
Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness (2008, background): “6 Social uses of personal health information within PatientsLikeMe™, an online patient community: What can happen when patients have access to one another’s data....................6 11:00 AM - 12:30 PM IN MARS AUDITORIUM.....6 TOPIC: BLOGS............................................................”
Use and Adoption Challenges of Wearable Activity Trackers (2015, background): “Online personal health information communities such as PatientsLikeMe (Frost & Massagli, 2008) already utilized the data analytics to reveal trends and symptoms that are related to a patient by his or her personal attributes.”
Blockchain Technology in Healthcare: A Comprehensive Review and Directions for Future Research (2019, background): “For instance, a patient who wants to share his medical history with a doctor at their first meeting [66].”
Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals (2016, background): “Examples of network support include “meeting other patients who had gone through similar experiences” [27], “a means to connect with others in similar situations” [15], and “fostering relationships based on shared attributes” [28].”
Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking (2009, background): “PatientsLikeMe has conducted some research, finding that “patients who choose to explicitly share health data within a community may benefit from the process, helping patients engage in dialogues that may inform disease self-management [8].”
A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication (2013, background): “An important aspect of using social media for health communication is that it can provide valuable peer, social, and emotional support for the general public [37,43,44,47,48,51,56,73,101,108,114] and patients [28,33,34,44,47,48,56,60,62,68,71,76,88,98,120].”