External Relations Chair

Professor James W Middleton MBBS, PhD, GradDipExSpSci, FAFRM(RACP), FACRM
Professor of Rehabilitation Medicine
John Walsh Centre for Rehabilitation Research | Sydney Medical School-Northern

THE UNIVERSITY OF SYDNEY
Kolling Institute of Medical Research, Level 12 | Royal North Shore Hospital | St Leonards| NSW | 2065 | AUSTRALIA

T +61 2 9926 4962| F+61 2 9926 4045

E james.middleton@sydney.edu.au | W http://www.rehab.med.usyd.edu.au

External Relations Committee Members

Name

Country

 Abel Dr Rainer Germany
 Katoh, Dr Shinsuke Japan
 Kovindha, Dr Apichana Thailand
Li, Prof Jianjun China
Montero, Dr Federico Costa Rica
O’Connell, Dr Colleen Canada
Otom, Dr Ali Jordan
Singhal, Dr Raj New Zealand
Soopramanien, Dr A UK
Theron, Dr Francois South Africa

First international community survey capturing the lived experience of persons with SCI

The International Spinal Cord Injury (InSCI) community survey is the first multi-national, cross-sectional survey to be conducted simultaneously across 22 countries across the six World Health Organisation (WHO) regions, collecting comparable data on the ‘lived experience’ of persons living in the community with spinal cord injury (SCI). InSCI is a collaborative project between ISCoS and the International Society of Physical and Medicine Rehabilitation (ISPRM), supported by the Swiss Paraplegic Research in Nottwil, Switzerland, as the Coordinating International Study Centre. The Swiss Spinal Cord Injury (SwiSCI) cohort study served as the model for developing the InSCI study protocol and its operational aspects.

Data collection began in January 2017 and was completed in December 2018, with over 12,500 participants with SCI recruited using a mix of sampling frames, recruitment sources and response modes. Early results of the study were presented recently at the 13th ISPRM World Congress held in Kobe, Japan. Further results will be presented in November at ISCoS in Nice, France, with the first six peer-reviewed papers to be published by the end of this year or beginning of 2020 in a special issue of Archives of Physical Medicine and Rehabilitation, with other papers following.

The InSCI survey provides a crucial first step within context of the Learning Health System for Spinal Cord Injury (LHS-SCI) initiative by generating evidence on functioning, health and subjective wellbeing of persons with SCI and description of the societal response to SCI, providing a comparative learning experience among diverging stages of economic development and health care, insurance and social welfare systems globally. Results of the survey will be used to implement the findings on different levels informed by policy briefs and stakeholder dialogues with formulation of recommendations and policies to improve the situation of persons living with a SCI.

It is planned that a follow up 5-year survey will be conducted in 2022/2023, with lessons learned from current survey helping to address some methodological and operational challenges for achievement of an expanded representation of countries and regions globally, particularly low resource settings. Further, an update of the IPSCI report, based on InSCI data is planned to evaulate if and how far the recommendations of the current version have been implemented, which will be released in 2023.

For more information, please contact James Middleton, Chair of External Relations Committee.

External Committee Terms of Reference

REPORTS TO

ISCoS Executive

REPORTER

Chairperson

CHAIRPERSON

To be appointed by President

Term of Office:

3 (+3) years for Chair / 4 years for Members

ENDORSED BY

ISCoS ERC & ISCoS Executive

DATE

2017

NEXT REVIEW

October 2019

The External Relations Committee (ERC) was reconstituted in 2017 with new membership, terms of reference and expanded roles, incorporating four planned subcommittees: World Health Organisation (WHO)-Liaison, External Societies, Disaster and Affiliated Societies. The standing ISCoS Disaster Committee has been integrated into the ERC as a subcommittee, chaired by Professor Shinsuke Katoh. Creation of a new Affiliated Societies subcommittee under the ERC is a priority once the new ISCoS Constitution has been approved. The aim will be to promote close working relations and partner with affiliated societies and regional networks to develop and/or strengthen services, care and supports for people with SCI. An early activity that the ERC is planning to undertake in conjunction with our affiliated societies and networks is to map SCI services globally against defined criteria.

James Middleton attended stakeholder consultation meetings at WHO Headquarters in Geneva from 10-12 January 2018 with representatives from the WHO Prevention of Blindness and Deafness, Disability and Rehabilitation Unit and other relevant WHO departments, along with rehabilitation professional associations, research institutions, development organizations and funding bodies. The meeting gave feedback on WHO’s rehabilitation agenda for the next three years, as well as a package of tools and resources WHO has developed to provide technical support and practical guidance to help governments in strengthening the health system to provide quality rehabilitation services. The Support Package guides governments through a four-step process of rehabilitation system assessment, strategic planning, establishment of a monitoring framework and evaluation and review processes, as well as implementation.

ISCoS’ new collaborative triennial work plan with the WHO, as a non-State actor in official relations, is being reviewed for approval at the 142nd session of the WHO Executive Board (EB142) taking place in Geneva on 22-27 January 2018. ISCoS has also made a statement to the EB142 relating to the need to strengthen rehabilitation within the draft WHO Thirteenth General Programme of Work (2019-2023).

A collaborative workshop between ISCoS and the International Society of Physical and Rehabilitation Medicine (ISPRM) entitled “Supporting global disaster planning and response for SCI in low resource settings” will be run during the ISPRM 12th World Congress being held in Paris from 8-12 July 2018.