‘Discuss’: A Multi-Disciplinary Bloggers Summit on the Rising Importance of Patient Social Media for Support During Treatment of Chronic Illnesses
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Abstract
Background
Specific social media communities have exploited the emergence of web 2.0 technologies and patient empowerment to start to alter medicine from a reactionary to a more participatory practice. The ability to share information through social media communities has improved communication about medical conditions, treatments and the prevention of illness. This aggregation and ‘data donorship’ has generated patterns and insights about patients’ desire to be more actively involved in managing their condition and facilitated the development of patient support systems and coping mechanisms when embarking on long-term treatment programmes for chronic conditions.
Methods
Patients, HCPs Pharmaceutical companies and NGOs were invited to comment on the impact of social media support on their approach to the management of long-term illness as part of a week-long ‘real time’ discussion forum on a website designed to generate insights for the pharmaceutical industry about stakeholder needs.
Results
More than 30 experts contributed to the research week; the site received approximately 8,000 viewings per day with multiple outreach social media sites further activated to share insights. The role of social media support was reviewed for the collaborative management of infectious diseases, cancer, diabetes, mood disorders, neurodegenerative conditions, rare diseases, paediatric development and endocrinological disorders. Advantages and disadvantages of social media were highlighted by several types of HCP – medical students, nurse practitioners, primary care physicians and therapy area opinion leaders.
Conclusions
Patients are becoming proficient practitioners of the social web to enhance and in some cases challenge the way they manage living with a chronic illness. This is having a direct impact on the collaboration between a patient and their HCP. While HCPs welcome the use of social media in general where patients are motivated to take greater responsibility for their health, there are some concerns about the quality of some social media facilities and the lack of qualitative medical input into the content of mainstream/popular social media platforms.
Specific social media communities have exploited the emergence of web 2.0 technologies and patient empowerment to start to alter medicine from a reactionary to a more participatory practice. The ability to share information through social media communities has improved communication about medical conditions, treatments and the prevention of illness. This aggregation and ‘data donorship’ has generated patterns and insights about patients’ desire to be more actively involved in managing their condition and facilitated the development of patient support systems and coping mechanisms when embarking on long-term treatment programmes for chronic conditions.
Methods
Patients, HCPs Pharmaceutical companies and NGOs were invited to comment on the impact of social media support on their approach to the management of long-term illness as part of a week-long ‘real time’ discussion forum on a website designed to generate insights for the pharmaceutical industry about stakeholder needs.
Results
More than 30 experts contributed to the research week; the site received approximately 8,000 viewings per day with multiple outreach social media sites further activated to share insights. The role of social media support was reviewed for the collaborative management of infectious diseases, cancer, diabetes, mood disorders, neurodegenerative conditions, rare diseases, paediatric development and endocrinological disorders. Advantages and disadvantages of social media were highlighted by several types of HCP – medical students, nurse practitioners, primary care physicians and therapy area opinion leaders.
Conclusions
Patients are becoming proficient practitioners of the social web to enhance and in some cases challenge the way they manage living with a chronic illness. This is having a direct impact on the collaboration between a patient and their HCP. While HCPs welcome the use of social media in general where patients are motivated to take greater responsibility for their health, there are some concerns about the quality of some social media facilities and the lack of qualitative medical input into the content of mainstream/popular social media platforms.
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