A186 who, global disability action plan....

1. The Learning Health System
for Spinal Cord Injury
(LHS-SCI)
Giustini A, Gutenbrunner C, Stucki G,
on behalf of the Learning Health System for SCI and under the effort
of the WHO’s Global Disability Action Plan,
An activity under ISPRM-WHO’s Collaboration-plan
coordinated by ISPRM and ISCoS,
supported by the Swiss Paraplegic Research

2. The Learning Health System for
Spinal Cord Injury (LHS-SCI)
• an initiative embedded in the World Health Organization’s (WHO) Global
Disability Action Plan 2014-2021 ‘Better health for all people with disability‘
• under the auspices of the Disability and Rehabilitation team at WHO in the
Blindness and Deafness Prevention, Disability and Rehabilitation Unit
• dedicated to the continuous improvement of the lived experience of people
living with spinal cord injury (SCI) by means of an international evidence-
and rights-informed research and policy effort
• participating countries learn from each other’s successes to jointly develop
research and policy capacity towards better future policies, services and
care

3. World Health Organization. WHO Global Disability Action Plan 2014-2021: Better health for all people with disability. Sixty-
seventh World Health Assembly 4 April 2014: World Health Organization; 2014; Available from:
http://www.who.int/disabilities/actionplan/en/
LHS-SCI aims
• to achieve the three objectives of the Global Disability Action Plan
• to implement the recommendations made by the IPSCI report
Framework for the
implementation of

4. Objective 2: to strengthen and extend
rehabilitation, habilitation, assistive technology,
assistance and support services, and
community-based rehabilitation
Objective 3: to strengthen collection of relevant and
internationally comparable data on disability and
support research on disability and related services2
Objective 1: to remove barriers and
improve access to health services and
programs
World Health Organization. WHO Global Disability Action Plan 2014-2021: Better health for all people with disability. Sixty-
seventh World Health Assembly 4 April 2014: World Health Organization; 2014; Available from:
http://www.who.int/disabilities/actionplan/en/

5. IPSCI Main Recommendations
1. Improve health sector response to SCI
2. Empower people with SCI and their families
3. Challenge negative attitudes to people with
SCI
4. Ensure that buildings, transport and
information are accessible
5. Support employment and self-employment
6. Promote appropriate research and data
collection

6. Goal of the LHS-SCI
To understand the
problems and needs of
people living with SCI and
to propose health system
responses that can
address these needs.

7. “The Learning Health System”
… health systems ‘learn’ when they can rely on
cyclical dynamics to identify issues, create a
response, implement change, observe the
consequences, respond to the results of the
implementation, and revise and reshape the
response:
that is, learning from success and failure.

8. Building Blocks of the
Implementation
“The
Learning
Health
System”
RECOMMENDATIONS
Outcomes
Would use other colours for
the box and arrows
Maybe in the style of slide 3

9. Three Interlocking Stages of
LHS-SCI
Generating Evidence
International SCI
Survey (InSCI)
&
Description of the
Cross-cultural
Societal Response
Implementation
National Stakeholder
Dialogue
Capacity Building
Policy and Research
Capacity Program

10. The Three Stages of LHS-
SCI
To achieve these aims the LHS-SCI is organized in three interlocking
stages
1. Evidence generation from the
a. International Spinal Cord Injury Survey (InSCI);
a survey to assess functioning, health and well-being of persons
with SCI in more than 20 countries worldwide.
b. Description of the Cross-cultural Societal Response;
a consolidated analysis of the InSCI country’s health and health-
related systems to identify patterns of unmet needs and gaps in
these systems.
2. Implementation relying on the National Stakeholder Dialogues; the
most promising mechanism to identify actions to implement
research results in health as identified by the InSCI survey and also
focusing on the issues identified in the IPSCI report.
3. Capacity Building achieved through a two-part Policy and Research
Capacity Effort (Scientific capacity building and Management of
standardized health information).

11. States Parties are required to collect statistical data that
enable them to formulate and implement policies that give
effect to the rights in the Convention, so that people with
disabilities, can fully participate in all areas of society, from
family life, education and employment to community and
country.
Article 31 of the Convention on the
Rights of Persons with Disabilities
(CRPD)
Generating Evidence

12. Epidemiology of SCI
• Data on prevalence of SCI are sparse and range between 280 (Finland)
& 1298 (Canada) per million population
• Estimated global incidence for traumatic SCI between 40 & 80 new
cases per million population per year
• In-hospital mortality between 24.1% (Africa) & 2.1% (Western Pacific)*
• First-year survival between 86.5% (Americas) and 95.6% (Europe)*
• Almost no data on non-traumatic SCI or etiologies
• Most data from single centre hospital-based surveys, not generalizable
to the rest of the country
• Small sample sizes
• Variation in SCI case definition and inclusion criteria
• Different methods used for determining incidence and prevalence
• Underreporting of cases (i.e. non-traumatic SCI)
* Pooled for traumatic and non-traumatic SCI IPSCI Report 2013
Lee et al. Spinal Cord. 2014 Feb;52(2):110-6
Chamberlain et al. Neuroepidemiology. 2015;44(3):182-98

13. IPSCI Implementation Requires…
Valid and reliable data that is…
 Relevant to IPSCI recommendations
 International
 longitudinal
…to provide the basis for Stakeholder Dialogues

14. Valid and reliable data that is…
 Relevant to IPSCI recommendations
Data about the complete lived experience of SCI, including
environmental determinants and personal factor characteristics,
that explains the functioning and well-being of people living with
SCI.
IPSCI Implementation Requires…

15. Valid and reliable data that is…
 International
To learn from successes in shaping the societal response
(micro, meso, macro) across countries in different economic and
development stages and health and social systems.
IPSCI Implementation Requires…

16. Valid and reliable data that is…
 Longitudinal
To monitor changes in societal response over time in light of
IPSCI recommendations.
IPSCI Implementation Requires…

17. The International Spinal Cord
Injury Survey (InSCI)
 Multi-national community survey (28 participating countries)
 Repeated every five years, start January 2017
 To describe and identify factors that are associated with functioning, health
and well-being of persons living with SCI within and across countries

18. Study Objective
• To describe the lived experience of persons with SCI in the
participating countries
 to collect comprehensive data on functioning, health and well-being of
people living with SCI in the community
 Generating evidence as the basis for the following two stages of the LHS-
SCI
• Expected results of the survey will be used as the basis for
Stakeholder dialogues informing policy reforms designed to improve
functioning, health maintenance, and wellbeing of persons with SCI

19. Data Collection Tools –
a Twofold Approach
The InSCI questionnaire – the person’s perspective
– Cross-culturally adapted ICF-based questionnaire
– International and national modules
Variables of the health system and economic
resources – the societal perspective
– Country reports
– Macroeconomic analysis
• Economic context (e.g. Income disparities)
• Demographic characteristics (e.g. Fertility rate)
• Health system status (e.g. Expenditure on health)

20. The InSCI Questionnaire

21. Cross-Cultural Societal Response
(Country Reports)
A mixed methods study to identify key indicators that describe the situation of persons
with SCI, the general societal response, the health and rehabilitation system and the
experience for a SCI person after discharge from inpatient rehabilitation.
Pacheco Barzallo D & Gross-Hemmi MH, Am J Phys Med Rehabil, LHS-SCI Special Issue, under review.
Country
Reports
Current situation of the health
system
Numbers on health workforce and infrastructure
Basic epidemiological data Prevalence, incidence, mortality
Lived experience of SCI Accessibility to public buildings and transportation, employment situation
and poverty incidence, public campaigns for the prevention of SCI, and
education achievement, access to health and rehabilitation services
including assistive devices, and workplace regulations on health and
safety
General societal response to
SCI
Type, number and description of the specialized care persons with SCI
receive, such as specialized care facilities, insurance coverage and
disability related social protection measures, national health strategies
and campaigns, disability person’s organization, and specific laws for
vocational integration
Continuity of care after a
traumatic SCI with 6 pre-
defined milestones
Injury, rescue, acute care – stabilization, specialized centres,
rehabilitation, community and outpatient care

22. Acknowledgment
InSCI is part of The Learning Health System for Spinal Cord Injury, an initiative embedded in WHO’s
Global Disability Action Plan 2014-2021.
The members of the InSCI Steering Committee are: Christoph Gutenbrunner (ISPRM representative),
Doug Brown (ISCoS representative), Gerold Stucki (Chair Scientific Committee), Jianan Li (Co-Chair
Scientific Committee), Mirjam Brach (Representative Coordinating Institute, Switzerland), Christine Thyrian
(Representative Study Center, Switzerland), Marcel W.M. Post (Scientific Advisor), Jerome Bickenbach
(Scientific Advisor), Marcelo Riberto (Brazil), Juan Manuel Guzmán González (Mexico), Reuben Escorpizo
(USA), James Middleton (Australia), Jianan Li (China), Eiichi Saitoh (Japan), Zee-A Han (Korea), Nazirah
Binti Hasnan (Malaysia), Xiang-Hu (Shaun) Xiong (New Zealand), Luh Karunia Wahyuni (Indonesia),
Apichana Kovindha (Thailand), Abderrazak Hajjioui (Morocco), Conran Joseph (South Africa), Brigitte
Perrouin-Verbe (France), Christoph Gutenbrunner (Germany), Christina-Anastasia Rapidi (Greece), Iuly
Treger (Israel), Mauro Zampolini (Italy), Anda Nulle (Latvia), Alvydas Juocevicius (Lithuania), Marcel Post
(Netherlands), Johan K. Stanghelle (Norway), Piotr Tederko (Poland), Jorge Laíns (Portugal), Mercè
Avellanet (Spain), Per Ertzgaard (Sweden), Michael Baumberger (Switzerland)