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The Learning Health System
for Spinal Cord Injury
(LHS-SCI)
Giustini A, Gutenbrunner C, Stucki G,
on behalf of the Learnin...
The Learning Health System for
Spinal Cord Injury (LHS-SCI)
• an initiative embedded in the World Health Organization’s (W...
World Health Organization. WHO Global Disability Action Plan 2014-2021: Better health for all people with disability. Sixt...
Objective 2: to strengthen and extend
rehabilitation, habilitation, assistive technology,
assistance and support services,...
IPSCI Main Recommendations
1. Improve health sector response to SCI
2. Empower people with SCI and their families
3. Chall...
Goal of the LHS-SCI
To understand the
problems and needs of
people living with SCI and
to propose health system
responses ...
“The Learning Health System”
… health systems ‘learn’ when they can rely on
cyclical dynamics to identify issues, create a...
Building Blocks of the
Implementation
“The
Learning
Health
System”
RECOMMENDATIONS
Outcomes
Would use other colours for
th...
Three Interlocking Stages of
LHS-SCI
Generating Evidence
International SCI
Survey (InSCI)
&
Description of the
Cross-cultu...
The Three Stages of LHS-
SCI
To achieve these aims the LHS-SCI is organized in three interlocking
stages
1. Evidence gener...
States Parties are required to collect statistical data that
enable them to formulate and implement policies that give
eff...
Epidemiology of SCI
• Data on prevalence of SCI are sparse and range between 280 (Finland)
& 1298 (Canada) per million pop...
IPSCI Implementation Requires…
Valid and reliable data that is…
 Relevant to IPSCI recommendations
 International
 long...
Valid and reliable data that is…
 Relevant to IPSCI recommendations
Data about the complete lived experience of SCI, incl...
Valid and reliable data that is…
 International
To learn from successes in shaping the societal response
(micro, meso, ma...
Valid and reliable data that is…
 Longitudinal
To monitor changes in societal response over time in light of
IPSCI recomm...
The International Spinal Cord
Injury Survey (InSCI)
 Multi-national community survey (28 participating countries)
 Repea...
Study Objective
• To describe the lived experience of persons with SCI in the
participating countries
 to collect compreh...
Data Collection Tools –
a Twofold Approach
The InSCI questionnaire – the person’s perspective
– Cross-culturally adapted I...
The InSCI Questionnaire
Cross-Cultural Societal Response
(Country Reports)
A mixed methods study to identify key indicators that describe the situ...
Acknowledgment
InSCI is part of The Learning Health System for Spinal Cord Injury, an initiative embedded in WHO’s
Global ...
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  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 13. IPSCI Implementation Requires… Valid and reliable data that is…  Relevant to IPSCI recommendations  International  longitudinal …to provide the basis for Stakeholder Dialogues
  14. 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. 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. 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. 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. 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. 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. 20. The InSCI Questionnaire
  21. 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. 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)

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