At the International Spinal Cord Society (ISCoS) 2013 meeting, a workshop was held to share lessons learned from leading international multicentre trials and collaborations as well as to discuss the benefits and barriers to international collaborations.
ISCoS 52nd Annual Scientific Meeting
Haliç Congress Center Istanbul, Turkey
Workshop Executive Summary
The workshop was sponsored by Institute for Safety Compensation and Recovery Research (ISCRR), the Rick Hansen Institute (RHI) and the Ontario Neurotrauma Foundation (ONF) and supported by the Spinal Research Institute (SRI). Chaired by ISCoS President, Associate Professor Doug Brown, the workshop featured presentations on successful international collaborations from the perspective of researchers, clinicians and consumers, some small group discussions, and ended with a panel discussion.
Workshop organising committee
- Doug Brown, President ISCoS & Founding Member, Inaugural Director, SRI
- Susie Charlifue, Chair, ISCoS Scientific Committee & Senior Principal Investigator, Craig Hospital
- Vanessa Noonan, Director of Research, RHI
- Phalgun Joshi, Managing Director, Translational Research Program, RHI
- Kent Bassett-Spiers, CEO, ONF
- Keith Hayes, Provincial Lead SCI Research, ONF
- David Berlowitz, Research Leader, Institute for Breathing and Sleep
- Marnie Graco, Program Manager, Institute for Breathing and Sleep
- Verna Smith, Neurotrauma Program Lead, ISCRR
- Debora Romero, Neurotrauma Program Manager, ISCRR (workshop organising committee secretariat)
Associate Professor Doug Brown, ISCoS President - Welcome Video
- Introductory Presentation: Dr. Keith Hayes, Ontario Neurotrauma Foundation (ONF), Toronto, Canada. The Paradigm Shift Towards International Collaborations - Introductory Video
- Presentation: Dr. David Berlowitz, Institute for Breathing and Sleep (IBAS), Melbourne, Australia. Successful International Collaborations- Researcher Perspective
- Presentation: Dr. Rüdiger Rupp, Heidelberg University, Spinal Cord Injury Centre, Germany. Successful International Collaborations (European EMSCI)- Clinician Perspective
- Presentation: Jane Horsewell, President, European Spinal Cord Injury Federation. SCI consumers as active stakeholders in international research collaborations
- Presentation: Dr. Phalgun Joshi, Rick Hansen Institute, Vancouver, Canada. Technological platforms for enabling collaborations
For the full set of speaker biographies and abstracts please click here.
Workshop Small Group Discussions Summary
The small group discussions focussed on identifying key enablers and barriers to international collaborations. One crucial enabler to international projects is having an engaged and enthusiastic spinal cord community, including PIs, clinicians, researchers and consumers. An insular and protective attitude to sharing ideas and work leads to a non-collaborative atmosphere. Sufficient funding that can cover all aspects of research, from inception to dissemination and translation, without restrictive conditions and limitations, will further enable research teams to be successful. Additionally, access to the appropriate technology to facilitate communication and meaningful contact between collaborators must be in place. One barrier to international collaborations is the funnel effect, which often prevents large trials from being generalizable due to the filtering that occurs from processes relating to admissions, screening, participation and completion. Meaningful contribution and participation of people with spinal cord injury (SCI) at all levels of the study is necessary to counter this effect. Finally, time, in terms of grant duration, was recognized as another key barrier. Building international multicentre trials requires a significant effort, and projects often need to run longer than the funding period allows.
Workshop Panel Discussion Summary
The panel of was primarily composed of funders and leads in international multicenter collaborative projects. Three major themes emerged from the discussions: breaking down funding barriers, communication and transparency, and future innovative solutions.
Innovative ways organizations dealt with funding barriers included the creation of a network structure of funding organisations, using novel ways to leverage funding, and expansion of their organization outside of their own jurisdiction. The network structure, rather than the institute or foundation model, has been successful in overcoming barriers related to resourcing and access to patients and in facilitating collaboration between partners to solve problems and fund research ‘champions’. Additionally, organizations are identifying novel ways of leveraging funding, such as partnering with funders outside of their jurisdiction, in order to participate in international, multi-centre collaborations. This allows groups without international mandates to be a part of global studies by funding local trial sites that can contribute to a larger study. Obtaining a mandate to fund research in other countries provided it delivers results in the funder jurisdiction more rapidly is another way to overcome barriers to participation.
The most important aspect of international multi-centre funded collaborations, as agreed upon by all the funders, was communication and transparency. How the needs and expectations of people with SCI, researchers, funders, policy-makers and government are to be balanced should be clearly communicated from the onset to ensure that all parties are clear on what needs to be achieved. Explicit statements from researchers on benefits, return on investment and actual cost of developing and maintaining a multi-centre trial are key. Better communication of the issues surrounding SCI with good supporting data and translatable outcomes is similarly essential to engage policy-makers and government and to secure significant funding for SCI research.
The third topic that was discussed by the panel was future innovative solutions. One solution is to set clear expectations and show who will benefit from research when identifying funding. For example, in some countries the government will not benefit from changes to health care and would therefore be less likely to fund research in this area. The SCI community also needs to reconcile the expectations of people living with SCI, funders, policy-makers and researchers. This is critical to determine if funders can work together, crossing state/provincial and international barriers, in order to solve agreed upon problems and issues. There is also potential to look to other areas of research and to build upon their successful models of collaboration. For instance, consumer and non-governmental organizations have been successful in driving practice change and setting the research agenda in other disease areas. Specialized groups, such as ISCoS, should be utilized to determine if research findings are translatable and applicable across jurisdictions. Finally, there needs to be a greater focus on implementation. To meet the goal for improving quality of life for people living with SCI, it is important to fund both research and ways to implement proven interventions into healthcare.
- Bill Barrable, CEO, RHI
- Kent Bassett-Spears, CEO, ONF
- Verna Smith, Neurotrauma Program Lead, ISCRR
- Michael Stacey, University of Western Australia
- David Berlowitz, IBAS, Melbourne, Australia
- Keith Hayes, Provincial Lead SCI Research, ONF (Chair)
Where to now? Next steps in international collaborative research
- Consumer survey (SCI Consumer Participation in Clinical Trials) is currently in progress. If you are living with a spinal cord injury and are interested in providing direct input on what factors about clinical trials encourage or discourage you from participating please follow the link to complete.
- Clinician / Researcher survey (Barriers and Facilitators to SCI Research: A Survey of the International Clinical Research Community) was recently launched in June. Please follow the link to complete.
- Future presentations will be announced here - stay tuned!