From Social Networks to Social Medicine: Exploring the role of online interventions
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Abstract
Background: The Canadian healthcare system supports an universal publicly funded health insurance system that insures the costs of medically necessary services without co-pays to all legal residents of Canada, including permanent residents [1]. To ensure sustainability of this system, innovative cost effective and timely ways for delivering insured services are necessary. By pushing the boundaries of clinical practice, Web 2.0 technologies, including the proliferation of online communities [2, 3], provide possible alternatives for the provision of care to a nation. Caring Voices (www.CaringVoices.ca), a national platform for providing support and clinical education to cancer survivors is one such example and is one of the few online communities directly associated with an hospital. Caring Voices offers barrier free access to health care professionals for all Canadians, and offers both professional and peer-to-peer support and clinical education.
Objective: To describe the creation of an hospital based social networking community, and to explore its feasibility for the delivery of clinical education and supportive care, and for conducting clinical research within the context of the Canadian health care system.
Materials: www.CaringVoices.ca supports cancer survivors through asynchronous communication using forums, and synchronous text-based communication using a series of scheduled monthly events. Events provide clinical education and supportive care, and are moderated by either peer survivors, members of community cancer agencies, or health care professionals, including physicians, nurses, social workers and allied health care professionals.
Methods: Formal usability testing was conducted with eight participants using open-ended scenarios and participant observations. Informal usability data have been collected since launch of the platform in 2006, and two feasibility studies are being conducted to explore the possibilities of using the platform for clinical research.
Results: A total of 1180 users registered in the first 18 months with an average of 49.5 users registering per month. On average there are 9 monthly synchronous events with clinician led events account for 35% of synchronous communications. Other events included peer led support chats (41%) and living with cancer chats led by other experts in the cancer care community (24%). For clinically focused events moderators have been recruited from medicine (n=2), nursing (n=3), allied health (n=4) including social work, dietician, physical therapist and clinical psychologist, and other professionals (n=2) including a medical librarian and a personal trainer. Collaborations have been established with 3 hospital based cancer programs, 4 community based cancer programs, and both formal and informal training sessions have been provided for online moderators.
Conclusions: Hospital based social networking communities provide a new and innovative way of meeting patients' needs for clinical education and support in a system that is committed to the provision of care but has limited resources. In addition to meeting patients' needs this approach may result in cost savings, patient empowerment and activation and is a way of achieving patient centred care. Providers' willingness to participate in alternate models of care delivery will dictate the success of these communities. Wide scale adoption of these innovations will have an impact on care delivery and how research is conducted.
References
1. Detsky, A.S. and C.D. Naylor, Canada's Health Care System - Reform Delayed. N Engl J Med, 2003. 349(8): p. 7. [Medline] PMID: 12930935
2. Schweizer, K.J., H. Krcmar, and J.M. Leimeister. The role of virtual communities for the social network of cancer patients. in Twelfth Americas Conference on Information Systems. August 4-6, 2006. Acapulco, Mexico. URL: http://www.winfobase.de/lehrstuhl/publikat.nsf/intern01/8A67987A14BBA4A9C125721200474D08/$FILE/06-33.pdf WebCite®: http://www.webcitation.org/5Xq9c8fw2 [cached 2008-05-15)
3. Eysenbach, G., et al., Health related virtual communities and electronic support groups. BMJ, 2004. 328(7449). [Medline] PMID: 15142921
Objective: To describe the creation of an hospital based social networking community, and to explore its feasibility for the delivery of clinical education and supportive care, and for conducting clinical research within the context of the Canadian health care system.
Materials: www.CaringVoices.ca supports cancer survivors through asynchronous communication using forums, and synchronous text-based communication using a series of scheduled monthly events. Events provide clinical education and supportive care, and are moderated by either peer survivors, members of community cancer agencies, or health care professionals, including physicians, nurses, social workers and allied health care professionals.
Methods: Formal usability testing was conducted with eight participants using open-ended scenarios and participant observations. Informal usability data have been collected since launch of the platform in 2006, and two feasibility studies are being conducted to explore the possibilities of using the platform for clinical research.
Results: A total of 1180 users registered in the first 18 months with an average of 49.5 users registering per month. On average there are 9 monthly synchronous events with clinician led events account for 35% of synchronous communications. Other events included peer led support chats (41%) and living with cancer chats led by other experts in the cancer care community (24%). For clinically focused events moderators have been recruited from medicine (n=2), nursing (n=3), allied health (n=4) including social work, dietician, physical therapist and clinical psychologist, and other professionals (n=2) including a medical librarian and a personal trainer. Collaborations have been established with 3 hospital based cancer programs, 4 community based cancer programs, and both formal and informal training sessions have been provided for online moderators.
Conclusions: Hospital based social networking communities provide a new and innovative way of meeting patients' needs for clinical education and support in a system that is committed to the provision of care but has limited resources. In addition to meeting patients' needs this approach may result in cost savings, patient empowerment and activation and is a way of achieving patient centred care. Providers' willingness to participate in alternate models of care delivery will dictate the success of these communities. Wide scale adoption of these innovations will have an impact on care delivery and how research is conducted.
References
1. Detsky, A.S. and C.D. Naylor, Canada's Health Care System - Reform Delayed. N Engl J Med, 2003. 349(8): p. 7. [Medline] PMID: 12930935
2. Schweizer, K.J., H. Krcmar, and J.M. Leimeister. The role of virtual communities for the social network of cancer patients. in Twelfth Americas Conference on Information Systems. August 4-6, 2006. Acapulco, Mexico. URL: http://www.winfobase.de/lehrstuhl/publikat.nsf/intern01/8A67987A14BBA4A9C125721200474D08/$FILE/06-33.pdf WebCite®: http://www.webcitation.org/5Xq9c8fw2 [cached 2008-05-15)
3. Eysenbach, G., et al., Health related virtual communities and electronic support groups. BMJ, 2004. 328(7449). [Medline] PMID: 15142921
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