“Oh Dear, Should I Really Be Saying That on Here?†Issues of Identity and Authority in an Online Diabetes Community.
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Abstract
Background
The promise of self-management by increasingly ‘expert’ patients has obvious attractions for health services needing to make cost-savings. Diabetes is an area which has seen a plethora of self-management initiatives in recent years, often mediated by technology which the patient uses independently or in collaboration with health professionals. We established a closed virtual community for a group of patients with type 1 diabetes who used insulin pumps, with the aim of supporting self-management. The main element was a forum providing asynchronous peer to peer communication between patients. It also provided secure messaging between patients and health professionals, and access to health information.
Objectives
We aimed to understand how the discussion board was used by participants, what peer-to-peer information was exchanged, and how this community of users shaped the nature of the discussion over the 6 months of this study.
Methods
Data from the discussion board were captured on a weekly basis throughout the six-month period. Analysis of the discussion board postings used the constant comparative method. Key themes within the data were identified through repeated close readings and annotation. A coding framework was developed and refined, and subsequently applied to the full data set. As we had established this community de novo and we had recruited the participants, we were able to study how the discussion was shaped from the very start, and also take account of participant characteristics in our analysis (unlike more opportunistic studies of ongoing, open discussion forums).
Results
There were 219 messages posted in 6 months by 17 users (age range 22 to 70 years; 6 males, 11 females). Discussions centred around three core areas: a substantial focus on diabetes self-management issues, especially the challenge of achieving and maintaining good control of blood glucose levels; discussions about new possibilities or future treatments; and matters related to coping psychologically with having diabetes. In this paper we discuss two key issues that shed light on how the community of users shaped the nature of the discussion forum from the early days. First, we explore how the identity of the group as a space for diabetes discussion was established, including how boundaries became drawn about what was considered acceptable and unacceptable, including how more general social interaction was an initial feature but disappeared over time. Second, we focus on how participants established themselves within the community, including the strategies some individuals used to present themselves as reliable and authoritative sources of information.
Conclusions
Internet communities can have a valuable role in engaging people with chronic disease in issues affecting their health and health care. To harness potential benefits, health services need to understand the social processes that occur in online communities, including how the character and focus of the discussion is formed over time, and how both information and users can be constructed as authoritative and reliable.
The promise of self-management by increasingly ‘expert’ patients has obvious attractions for health services needing to make cost-savings. Diabetes is an area which has seen a plethora of self-management initiatives in recent years, often mediated by technology which the patient uses independently or in collaboration with health professionals. We established a closed virtual community for a group of patients with type 1 diabetes who used insulin pumps, with the aim of supporting self-management. The main element was a forum providing asynchronous peer to peer communication between patients. It also provided secure messaging between patients and health professionals, and access to health information.
Objectives
We aimed to understand how the discussion board was used by participants, what peer-to-peer information was exchanged, and how this community of users shaped the nature of the discussion over the 6 months of this study.
Methods
Data from the discussion board were captured on a weekly basis throughout the six-month period. Analysis of the discussion board postings used the constant comparative method. Key themes within the data were identified through repeated close readings and annotation. A coding framework was developed and refined, and subsequently applied to the full data set. As we had established this community de novo and we had recruited the participants, we were able to study how the discussion was shaped from the very start, and also take account of participant characteristics in our analysis (unlike more opportunistic studies of ongoing, open discussion forums).
Results
There were 219 messages posted in 6 months by 17 users (age range 22 to 70 years; 6 males, 11 females). Discussions centred around three core areas: a substantial focus on diabetes self-management issues, especially the challenge of achieving and maintaining good control of blood glucose levels; discussions about new possibilities or future treatments; and matters related to coping psychologically with having diabetes. In this paper we discuss two key issues that shed light on how the community of users shaped the nature of the discussion forum from the early days. First, we explore how the identity of the group as a space for diabetes discussion was established, including how boundaries became drawn about what was considered acceptable and unacceptable, including how more general social interaction was an initial feature but disappeared over time. Second, we focus on how participants established themselves within the community, including the strategies some individuals used to present themselves as reliable and authoritative sources of information.
Conclusions
Internet communities can have a valuable role in engaging people with chronic disease in issues affecting their health and health care. To harness potential benefits, health services need to understand the social processes that occur in online communities, including how the character and focus of the discussion is formed over time, and how both information and users can be constructed as authoritative and reliable.
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