Resilience, trust, and civic engagement in the post-CCSVI era

BMC Health Services Research
Shelly BenjaminyAnthony Traboulsee

Abstract

Scientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for MS. Despite limited evidence in support of the CCSVI hypothesis, the funding of clinical research was responsive to a demand by the public rarely seen in the history of medicine. We characterize patient perspectives about the CCSVI research trajectory, with particular attention to its impact on other non-pharmaceutical areas of MS research with a focus on stem cell interventions. Semi-structured interviews with 20 MS patients across Canada who did not have CCSVI interventions. Interviews were analysed for recurring themes and individual variations using the constant comparative approach. Participants had a critical view of the divestment of funds from longstanding research to support CCSVI trials. They retain a sense of optimism, however, about emerging evidence for stem cell interventions for MS, and highlight the need for greater caution and conscientious communication of advances in medicine and science. The unrealized hopes for CCSVI challenged but did not undermine the resilience of patient communities. The narrative that unfolde...Continue Reading

References

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Citations

Aug 15, 2018·Neurology. Clinical Practice·Shelly BenjaminyAnthony Traboulsee
Jan 12, 2021·International Journal of MS Care·Anne Christin RahnUNKNOWN Rehabilitation in Multiple Sclerosis (RIMS) Special Interest Group on Patient Autonomy

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Software Mentioned

CCSVI
NVivo

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