Evidence map›Paper›PMID 29769084›Full record

ArticleBMC health services research2018

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

Shelly Benjaminy, Andrew Schepmyer, Judy Illes, Anthony Traboulsee

Abstract read
In one paragraph

Article in BMC health services research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Shelly BenjaminyNeuroethics Canada, University of British Columbia, Vancouver, Canada.
Andrew SchepmyerDivision of Neurology, Department of Medicine, University of British Columbia, Vancouver, Illinois, Canada.
Judy IllesNeuroethics Canada, University of British Columbia, Vancouver, Canada. jilles@mail.ubc.ca.ORCID 0000-0002-4791-8084
Anthony TraboulseeDivision of Neurology, Department of Medicine, University of British Columbia, Vancouver, Illinois, Canada. t.traboulsee@ubc.ca.

Funding

CIHR Canadian Institutes of Health ResearchStem Cell Network 13/5536Stem Cell Network FY17/PP2
6 · The paper itself

Abstract

backgroundScientific 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.

methodsSemi-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.

resultsParticipants 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.

conclusionsThe unrealized hopes for CCSVI challenged but did not undermine the resilience of patient communities. The narrative that unfolded highlights the importance of drawing a socially-minded space for public participation in science.

Indexed as

AdultAgedCanadaCerebrovascular DisordersChronic DiseaseFemaleHopeHumansMaleMiddle AgedMultiple SclerosisResilience, PsychologicalSpinal CordStem Cell TransplantationTrustVenous InsufficiencyChronic cerebrospinal venous insufficiencyEthicsHealth services researchMultiple sclerosisPublic engagement

Identifiers

PMID29769084
PMCPMC5956844

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.