Communicating the Experience of Illness through Patient Blogs
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Abstract
Background
Patient blogs range from New York Times journalist Dana Jennings blogging about his prostate cancer with hundreds of thousands of readers and hundreds of comments to a woman writing about her breast cancer with a small number of readers and few, if any, comments. Thirteen percent of e-patients write a blog about their diagnosis and treatment, where e-patients refers to the 61 percent of US adults who use the Internet for health information. The number of patient bloggers is likely to grow with the popularity of blogs and other forms of social media and the increased use of blogs on public health, hospital, and media websites.
Our primary question was what motivates people with chronic disease to start and maintain a blog. Our secondary question was what are the benefits for these patients, their family and friends, their healthcare providers, and others with the same disease.
Methods
We conducted a qualitative preliminary survey study of individuals diagnosed with chronic illness. The 24 respondents, 20 of whom wrote health blogs, were self-selected to participate by responding to a request by email or on Twitter. A larger study is under way.
Results
The reasons the 20 bloggers had for starting and maintaining a health blog included to help others with the same diagnosis, communicate with family and friends, express feelings, and track the progression of the disease and treatment. Respondents blogged for varying lengths of time and frequency. Most never thought to show their doctor, and were concerned their doctor would be offended by some of what they wrote. Four respondents did not blog; the reasons included that they never thought to, were too depressed, didn't want to think about their illness, or were concerned about privacy.
Conclusions
Patients who blog are very committed to the process and write very openly about the devastating experience of diagnosis and the physical and emotional toll of treatment. While people write journals and books about their experience of chronic disease and use email to communicate with family and friends, blogs offer visibility and immediacy. Many patients who blog are highly motivated to communicate with their family and friends and to help others, but not by the opportunity to communicate with healthcare professionals. Since the number of health bloggers is likely to grow, there is value in better understanding the motivations and perceived benefits of blogging especially when there are so many other ways to communicate the experience of illness. A further study is currently under way to investigate the benefits of health blogs for patients, their family, friends, other patients, and healthcare providers. One goal is to understand the benefits from these different perspectives; another is to consider if there are patients who would not otherwise consider it yet could benefit from a recommendation from their healthcare provider to start a blog. Finally we will analyze patient blogs to determine what public health and healthcare professionals can learn from perusing these narratives of the experience of illness.
Patient blogs range from New York Times journalist Dana Jennings blogging about his prostate cancer with hundreds of thousands of readers and hundreds of comments to a woman writing about her breast cancer with a small number of readers and few, if any, comments. Thirteen percent of e-patients write a blog about their diagnosis and treatment, where e-patients refers to the 61 percent of US adults who use the Internet for health information. The number of patient bloggers is likely to grow with the popularity of blogs and other forms of social media and the increased use of blogs on public health, hospital, and media websites.
Our primary question was what motivates people with chronic disease to start and maintain a blog. Our secondary question was what are the benefits for these patients, their family and friends, their healthcare providers, and others with the same disease.
Methods
We conducted a qualitative preliminary survey study of individuals diagnosed with chronic illness. The 24 respondents, 20 of whom wrote health blogs, were self-selected to participate by responding to a request by email or on Twitter. A larger study is under way.
Results
The reasons the 20 bloggers had for starting and maintaining a health blog included to help others with the same diagnosis, communicate with family and friends, express feelings, and track the progression of the disease and treatment. Respondents blogged for varying lengths of time and frequency. Most never thought to show their doctor, and were concerned their doctor would be offended by some of what they wrote. Four respondents did not blog; the reasons included that they never thought to, were too depressed, didn't want to think about their illness, or were concerned about privacy.
Conclusions
Patients who blog are very committed to the process and write very openly about the devastating experience of diagnosis and the physical and emotional toll of treatment. While people write journals and books about their experience of chronic disease and use email to communicate with family and friends, blogs offer visibility and immediacy. Many patients who blog are highly motivated to communicate with their family and friends and to help others, but not by the opportunity to communicate with healthcare professionals. Since the number of health bloggers is likely to grow, there is value in better understanding the motivations and perceived benefits of blogging especially when there are so many other ways to communicate the experience of illness. A further study is currently under way to investigate the benefits of health blogs for patients, their family, friends, other patients, and healthcare providers. One goal is to understand the benefits from these different perspectives; another is to consider if there are patients who would not otherwise consider it yet could benefit from a recommendation from their healthcare provider to start a blog. Finally we will analyze patient blogs to determine what public health and healthcare professionals can learn from perusing these narratives of the experience of illness.
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