The Kronikoen-Sarea Virtual Community of Chronic Patients: Research Lessons
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Abstract
Kronikoen-Sarea, the virtual community of patients, is an initiative of the Basque health system to support the quality of life of patients diagnosed with one or more chronic diseases in the Basque Country. The evidence-based platform research related to chronic illness management, patient empowerment, and resilience-oriented assumptions informed the creation of a community for chronic patients. It is a patient-centred approach and encourages the outsourcing of the disease instead of the disease chronic central dimension that defines the patient. The design and implementation of a virtual support network for chronic patients was launched in 2012 after piloting it with the participation of self-help patient associations.
Our presentation will report on the lessons learned from a mixed method study that systematically analysed via a mixed method design that included a survey (N=1247; n=140) and online synchronous and asynchronous focus groups, plus social media analytics. We evaluated the characteristics of the community, its impact on quality of life, and an exploration of its bearing in addressing the growing challenge of chronic illness.
Participants are overall satisfied with the platform. They particularly value the ability to control the levels of privacy. A small group of high utilizers adopt most of the platform tools but a most of participants are generally passive readers, i.e., users have not added friends. Despite having been designed with the goal of patients being able to obtain social support in managing their chronic illness, most of the content shared is not related to health or illness concerns. Similarly, the users do not perceive that being part of the community has an impact on managing their health. Some members emphasized, in the group discussions the high regard for the healthcare system. However, their participation in the virtual community is perceived as separate and independent from healthcare services. In the survey, similar findings were common. Patients do not comment with their doctor what their online activity is. The patients, who are active in the platform, value the social and emotional support that they give and receive among themselves and maintaining their interactions separate from their doctor-patient relationship.
The growth of social networking opportunities for patients across the world has not been accompanied by efforts at collecting evidence of its impact. Based on the quantitative and qualitative findings of our study, methodological, conceptual, policy, and programmatic lessons will be discussed. We will define and characterize a virtual community of patients, discuss the ability of social networking in empowering patients, assess participatory methodological approaches to study virtual communities, and discuss the challenges and opportunities for supporting patients via social networking and virtual communities.
Our presentation will report on the lessons learned from a mixed method study that systematically analysed via a mixed method design that included a survey (N=1247; n=140) and online synchronous and asynchronous focus groups, plus social media analytics. We evaluated the characteristics of the community, its impact on quality of life, and an exploration of its bearing in addressing the growing challenge of chronic illness.
Participants are overall satisfied with the platform. They particularly value the ability to control the levels of privacy. A small group of high utilizers adopt most of the platform tools but a most of participants are generally passive readers, i.e., users have not added friends. Despite having been designed with the goal of patients being able to obtain social support in managing their chronic illness, most of the content shared is not related to health or illness concerns. Similarly, the users do not perceive that being part of the community has an impact on managing their health. Some members emphasized, in the group discussions the high regard for the healthcare system. However, their participation in the virtual community is perceived as separate and independent from healthcare services. In the survey, similar findings were common. Patients do not comment with their doctor what their online activity is. The patients, who are active in the platform, value the social and emotional support that they give and receive among themselves and maintaining their interactions separate from their doctor-patient relationship.
The growth of social networking opportunities for patients across the world has not been accompanied by efforts at collecting evidence of its impact. Based on the quantitative and qualitative findings of our study, methodological, conceptual, policy, and programmatic lessons will be discussed. We will define and characterize a virtual community of patients, discuss the ability of social networking in empowering patients, assess participatory methodological approaches to study virtual communities, and discuss the challenges and opportunities for supporting patients via social networking and virtual communities.
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