Newsletter 24 | February 2020
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AO Spine RECODE-DCM sets research priorities and spearheads AO Spine Knowledge Translation
The Priority Setting Partnership (PSP) arm of the AO Spine RECODE-DCM project recently held its final consensus meeting in New York and agreed on the top 10 research priorities for Degenerative Cervical Myelopathy (DCM). An ambitious Knowledge Translation (KT) plan was developed and included in the study already early on, to make sure these priorities are the focus of future DCM studies.
The AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) project has three interlinked aims: to create a list of unanswered DCM research questions ranked according to priority, to establish a standardized definition for DCM, and to create a standardized set of baseline characteristics and outcomes which should be measured in all DCM research.
“It takes an average of 17 years for research evidence to reach clinical practice.”
“It takes an average of 17 years for research evidence to reach clinical practice,” Co-PI Benjamin Davies says. “We wanted to accelerate the process and to empower our stakeholders.”
Enabling the desired change
For successful KT, you need to know your stakeholders and understand what prevents or helps them use the knowledge.
“The most important aspect of KT is to identify why it is important to translate each piece of knowledge, who needs it, and what you want them to do with it. KT beginners typically jump straight into the implementation and ignore the planning,” KT expert Lisa Petermann says. “KT is about people, communicating with the right people, and motivating stakeholders to adopt new actions.”“KT is about communicating with the right people and motivating stakeholders to adopt new actions.”
Toto Gronlund from the James Lind Alliance and Iwan Sadler representing people affected by myelopathy participated in the PSP and the KT workshop. Both stress the importance of thinking about KT early on in your project. “Understanding the full experience of living with myelopathy and the urgency of creating patient-centred resources is important,” Sadler says.
Gronlund recommends including core information covering the whole myelopathy journey. “For example, in the PSP workshop we learned about the importance of early diagnosis and raising public awareness about the signs and symptoms for people living with myelopathy. Research should not be in isolation.”
Building KT capacity. Ben Davies, Toto Gronlund, Olesja Hazenbiller, and Liz Roberts in the AO Spine KT workshop (Cambridge, UK, October 2019).The KT working group led by Lisa Petermann. Recognizing other perspectives and establishing commitment through personal meaning for successful KT.Michael Fehlings, Sukhvinder Kalsi-Ryan, and James Guest. Finding the most important unanswered research questions with other DCM stakeholders.Co-PI Benjamin Davies emphasizes bringing all stakeholders together for the full picture.PI Mark Kotter encourages the funders and the researchers to step up to the challenge.KF SCI Chairperson Brian Kwon being interviewed for a video on RECODE-DCM, which will be published with the research priorities.Toto Gronlund leading the successful consensus meeting (New York, November 2019).3 - 7
An internationally recognized collaboration
The RECODE initiative and network has already been recognized by the Lancet Neurology (Vol.18(7)), and in the AO Davos Courses opening address in December 2019.
AO Spine is excited to continue the ethos of collaborative research.
“We are thrilled by the interest this partnership has created; there clearly is a need. In the end, we could only invite one in five volunteers to participate in the consensus meeting,” Knowledge Forum Spinal Cord Injury Project Manager Olesja Hazenbiller says.
AO Spine received over 3’500 research suggestions from a wide range of stakeholders around the globe. Out of these, 76 summary questions were generated. Based on their subsequent ranking, 26 questions were considered for the final workshop, where a consensus was found on the top 10 research priorities.
The main objective of the KT strategy is to move the priorities forward by encouraging scientists, funders, and policymakers to put their focus into these priorities, to study them, to collect and disseminate data.
The wording of the top 10 questions is being adjusted to serve as research questions. Results will soon be published, and the final outcome will be launched at the GSC in Rio de Janeiro, Brazil, in May 2020. The next objective is to develop a Core Outcome Data Set (COS), the minimum set of features that should be measured in all DCM research, and a common definition for DCM.
AO Spine thanks all participants in the process so far. We are excited to continue the strong ethos of collaborative research.
