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The 'Spinal Cord Injury Priority Setting
Partnership' (SCI PSP) has been working closely
and successfully with people with Spinal Cord
Injury, Cauda Equina Syndrome and Transverse
Myelitis, their carers, health and social care
professionals and the wider community. This
partnership was seeking to identify and prioritise
the most important research questions for these
three medical conditions, generally referred to as
'Spinal Cord Injury' (SCI). The outcomes of this
partnership - a 'Top 10' of the most important SCI
research questions - will enable researchers to
address topics that are important to the wider
SCI community.
The Process
1.
Bringing together all Stakeholders: The SCI PSP steering group made up of people with SCI, carers and
healthcare professionals first met in April 2013. A protocol outlining the aims, objectives and methods of the
partnership was finalised in June 2013 and can be downloaded here.
2.
Question gathering:a large scale survey was conducted between September and December 2013 for anyone
with an interest in spinal cord injury to submit potential research questions.
3.
Sorting: Questions gathered in the previous stage were sorted and grouped into topic areas by the SCI PSP
Information Manager, then checked against previous research to see if they had already been answered.
4.
Prioritising: Once all questions and true uncertainties had been gathered and sorted, a second Survey was
launched to identify which of all these questions were most important to those with an interest in spinal cord
injury. This Prioritisation Survey was conducted between 22nd April and 31st May 2014.
5.
Narrowing down to a 'Top 10': A Final Prioritisation Workshop to discuss and rank the top 25 questions from
the survey was held on Saturday 5th July 2014. Attendees, including people with a SCI, carers, patient
representatives and healthcare professionals, were able to express their views, hear different perspectives
and think more widely about SCI to ultimately identify the 10 most important research questions.
6.
Announcing the Results: the 'Top 10' research priorities were formally announced on 1st October 2014 and
are shown on the "Top 10 Research Questions" page of this website.
Partnership' (SCI PSP) has been working closely
and successfully with people with Spinal Cord
Injury, Cauda Equina Syndrome and Transverse
Myelitis, their carers, health and social care
professionals and the wider community. This
partnership was seeking to identify and prioritise
the most important research questions for these
three medical conditions, generally referred to as
'Spinal Cord Injury' (SCI). The outcomes of this
partnership - a 'Top 10' of the most important SCI
research questions - will enable researchers to
address topics that are important to the wider
SCI community.
The Process
1.
Bringing together all Stakeholders: The SCI PSP steering group made up of people with SCI, carers and
healthcare professionals first met in April 2013. A protocol outlining the aims, objectives and methods of the
partnership was finalised in June 2013 and can be downloaded here.
2.
Question gathering:a large scale survey was conducted between September and December 2013 for anyone
with an interest in spinal cord injury to submit potential research questions.
3.
Sorting: Questions gathered in the previous stage were sorted and grouped into topic areas by the SCI PSP
Information Manager, then checked against previous research to see if they had already been answered.
4.
Prioritising: Once all questions and true uncertainties had been gathered and sorted, a second Survey was
launched to identify which of all these questions were most important to those with an interest in spinal cord
injury. This Prioritisation Survey was conducted between 22nd April and 31st May 2014.
5.
Narrowing down to a 'Top 10': A Final Prioritisation Workshop to discuss and rank the top 25 questions from
the survey was held on Saturday 5th July 2014. Attendees, including people with a SCI, carers, patient
representatives and healthcare professionals, were able to express their views, hear different perspectives
and think more widely about SCI to ultimately identify the 10 most important research questions.
6.
Announcing the Results: the 'Top 10' research priorities were formally announced on 1st October 2014 and
are shown on the "Top 10 Research Questions" page of this website.
Introduction
