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Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Research Questions
  5. Method
  6. Preliminary Results and Discussion

Reports on a qualitative study of an asynchronous discussion forum hosted by PatientsLikeMe (PLM), an online community supporting 2,300 patients with chronic diseases like ALS (Lou Gehrig's Disease). Examines selected posts marked as “of particular interest” by the researchersas the basis of an analysis of the PLM group's social norms and information values, as reflected by the content of participants' posts.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Research Questions
  5. Method
  6. Preliminary Results and Discussion

Online social support groups have been found to improve coping, enhance the quality of life, facilitate health decision-making, and in some cases, increase survival time among chronic disease patients. As in any other social setting, participants in online support groups interact in ways that establish and reinforce what Elfreda Chatman called their “Small World” community norms and that, further, reflect the information values of the community. Such norms and values emerge both explicitly through rules that govern the community's behavior and implicitly through the give and take of the day-by-day interactions of community members.

PatientsLikeMe (PLM) is an online community that uses an asynchronous discussion forum to allow its members to share not only social support but also their symptomatology, treatment, medication, and outcome information with other members. The website currently supports 2,300 patients with chronic diseases like ALS (Lou Gehrig's Disease), Multiple Sclerosis (MS), and Parkinson's Disease.

The current study focuses on a qualitative analysis of the ALS community within PLM. ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, is a rare and incurable life-altering disease affecting approximately 30,000 Americans. This fatal, neurodegenerative disease attacks the nerves and muscles, resulting in the progressive loss of voluntary motor function and, eventually, difficulties in speaking, swallowing, and breathing. While ALS contributes to the weakening of voluntary motor functioning and eventual paralysis, most patients are still able to think clearly and rely on a variety of assistive technologies to aid in communication. The ability to communicate with others is an important aspect of patients' ability to cope with their disease and remain active participants in their own care.

Research Questions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Research Questions
  5. Method
  6. Preliminary Results and Discussion

This study explores the information seeking and sharing behaviors of the ALS community within the PatientsLikeMe website, with the aims of addressing the following research questions: 1.Based on forum postings, what are the issues of greatest importance to ALS community members? In particular, what is the relative importance of biomedical, socio-emotional, or organizational/systems messages? 2. What do these postings suggest about the shared social norms and information values of PLM participants? Overall, this study seeks to examine the social interaction and information exchange within an online community of individuals touched by ALS (including patients, their caregivers, and clinicians) so that we might gain richer insight into their experiences and needs as they try to cope with this debilitating and fatal disease.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Research Questions
  5. Method
  6. Preliminary Results and Discussion

We used inductive thematic analysis to analyze 1000 messages posted to the ALS discussion forum on the PatientsLikeMe website. The data included 1000 randomly chosen messages posted between 2005 and 2007. An initial codebook was developed by one author through an inductive analysis of randomly selected posts, without pre-determined categories. This codebook included explicit directions for coding procedures, as well as detailed sets of codes to be used to assess the purpose of an individual post (e.g., the post was made to help the poster, to help others, or to benefit the site); to delineate the content of the post (including factual matters, emotional tone, etc.); and the poster's textual practices (e.g., the use of signatures or emoticons). The authors tested and modified this codebook through an iterative process of coding, during which all authors first coded the same sets of posts and then compared the results. The authors discussed discrepancies in their coding in depth, and made changes to the codebook in light of these discussions. This process continued until an acceptable level of inter-coder agreement was reached. When the authors were satisfied that their coding practices were in sync, the codebook was finalized and the full dataset was divided up between authors for individual coding. The poster reports on a subsequent interpretivist examination of some posts, which were marked by the authors as being “of particular interest” during coding, as the basis of an analysis of the PLM group's social norms and information values, as reflected by the content of participants' posts.

Preliminary Results and Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Research Questions
  5. Method
  6. Preliminary Results and Discussion

We used inductive thematic analysis to analyze 1000 messages posted to the ALS discussion forum on the PatientsLikeMe website. The data included 1000 randomly chosen messages posted between 2005 and 2007. An initial codebook was developed by one author through an inductive analysis of randomly selected posts, without pre-determined categories. This codebook included explicit directions for coding procedures, as well as detailed sets of codes to be used to assess the purpose of an individual post (e.g., the post was made to help the poster, to help others, or to benefit the site); to delineate the content of the post (including factual matters, emotional tone, etc.); and the poster's textual practices (e.g., the use of signatures or emoticons). The authors tested and modified this codebook through an iterative process of coding, during which all authors first coded the same sets of posts and then compared the results. The authors discussed discrepancies in their coding in depth, and made changes to the codebook in light of these discussions. This process continued until an acceptable level of inter-coder agreement was reached. When the authors were satisfied that their coding practices were in sync, the codebook was finalized and the full dataset was divided up between authors for individual coding. The poster reports on a subsequent interpretivist examination of some posts, which were marked by the authors as being “of particular interest” during coding, as the basis of an analysis of the PLM group's social norms and information values, as reflected by the content of participants' posts.