Public Health Data Analyst – Consultancy: Global health equity survey for persons with Down syndrome and Intellectual disabilities

TERMS OF REFERENCE

Public Health Data Analyst – Consultancy: Global health equity survey for persons with Down syndrome and Intellectual disabilities

Humanity & Inclusion (HI) Global Inclusive Health Division

1. CONTEXT

Persons with disabilities have the same, and equal, right to the highest attainable standard of health as any human being[1]. This right is inherent, universal, and inalienable, and is enshrined in international law through human rights treaties including the UN Convention on the Rights of Persons with Disabilities, Article 25 Right to Health[2].

Governments have committed to ensuring that no one is left behind in Universal Health Coverage (UHC) and to reaching the furthest behind first. Yet today, 1.3 billion persons with disabilities continue to experience lower quality services or find the health and care they need is inaccessible and unaffordable. According to the ground-breaking WHO Global report on Health Equity for Persons with Disabilities, unfair, unjust and avoidable structural conditions affect persons with disabilities disproportionately and result in poorer health outcomes, and a 10 to 20-year life expectancy gap. These barriers are compounded for people with Down syndrome and other people with intellectual disabilities who experience worse health outcomes due to stigma, discrimination, inadequate policies, poverty, lack of accessibility, and poor-quality health services. UHC and SDG 3 commitments will not be achieved if health systems are not designed to provide quality information and services to people with disabilities, and in particular, people with intellectual disabilities. Yet there is a lack of data on health access and outcomes for people with Down syndrome and intellectual disabilities to address these barriers and health inequities. In light of this, Down Syndrome International (DSI)[3] and Humanity & Inclusion have launched a global consultation on health equity to better understand the challenges people with Down syndrome and people with intellectual disabilities experience in accessing quality healthcare, and provide recommendations to promote more equitable health systems.

HI and DSI have leveraged their complementary expertise and networks to run the global consultation. Humanity & Inclusion (HI) has played a leading role in promoting globally the right to health of persons with disabilities. Working in meaningful partnership with Organisations of persons with disabilities (OPDs) including women-led OPDs, women’s rights organisations, health actors and service providers, HI’s disability-inclusive approach to health systems strengthening focuses on interventions in health service delivery, capacity building of the health workforce, strengthening leadership and governance for inclusion, and civil societies role in accountability; as well as improving disability disaggregated data in health information management systems. HI is also a Non-State Actor working in official relations with WHO and providing technical support on disability inclusion in the health sector, including support to the rollout of the Global Report on Health Equity for Persons with Disabilities. Down Syndrome International (DSI) is a member of the International Disability Alliance, and has a global network of over 150 Organizations of Persons with Disabilities and their families. DSI co-led the Listen, Include, Respect Guidelines, which consulted nearly 1,500 people with intellectual disabilities and their families in their development.

1. DESCRIPTION OF THE EXPECTED SERVICE

HI and DSI adopted a mixed-methods approach to the Global Consultation on Health Equity, comprising of a survey, and focus group discussions. The scope of this consultancy is related to data analysis for the survey only (excluding FGDs); and is comprised of two different survey instruments:

1. Survey for Individuals: for people with Down syndrome, people with intellectual disabilities, their families and support persons. Approximately 600 individual survey responses; 164 columns.
2. Survey for Organisations: that represent or work with people with Down syndrome and intellectual disabilities. Approximately 100 organisation responses; 99 columns.

Overview of services requested:

• Consultant will be provided with annonymised survey data and should adhere to data protection principles
• Quantitative analysis (descriptive, comparative, thematic) using advanced statistical software (e.g. SPSS, STATA, R). As open-ended questions are also included, these will also require some qualitative analysis.
• Analytical process to be documented and provided
• Summary tabulations presenting survey analysis (in-depth narrative not required)
• Data visualizations, graphs, charts on priority indicators and findings

Specifically: Survey Data Analysis

1. Preparation
   1. Data Cleaning: Review and clean the data to handle missing values, inconsistencies, and outliers.
   2. Data Coding: Categorize and code open-ended responses to facilitate quantitative analysis.
   3. Data Storage: Store data securely, ensuring compliance with data protection regulations.
2. Descriptive Analysis
   1. Demographics: Analyze demographic information (age, gender, country, etc.) of respondents.
   2. Frequency Distribution: Calculate frequencies and percentages for categorical variables.
   3. Central Tendency and Dispersion: Calculate means, medians, and standard deviations for continuous variables.
3. Comparative Analysis
   1. Cross-tabulations: Perform cross-tabulations to explore relationships between different variables (e.g., access to health services by region).
   2. Group Comparisons: Compare responses between different groups (e.g., individuals with Down syndrome vs. intellectual disabilities, family/support person response, different countries, LMICs, urban/rural etc).
4. Thematic Analysis (Open-ended questions)
   1. Identifying Themes: Use qualitative analysis software or manual coding to identify common themes.
   2. Theme Frequency: Count the frequency of each theme to understand their prevalence.
   3. Narrative Summarization: Summarize key insights and representative quotes from open-ended responses.
5. Data visualization
   1. Summary tabulations presenting survey analysis (in-depth narrative not required)
   2. Data visualizations, graphs, charts on priority indicators and findings
6. CONSULTANT’S PROFILE
7. Master’s degree in Information Management, Computer Science, Media or Social Sciences, Public Health or Epidemiology or a related field from an accredited academic institution with two years of relevant professional experience; or University degree in the above fields with four years of relevant professional experience.
8. Advanced skills in statistical quantitative analysis using advanced statistical software (e.g. SPSS, STATA, R)
9. Good computer background, including experience with relational databases, Microsoft applications, spreadsheets, and word processing; including familiarity with Microsoft forms, survey tools and data outputs.
10. Knowledge and application of data protection guidelines and principles;
11. Experience in advanced data visualization, presentation, and information design skills;
12. Numerical skills and experience in data analysis and data visualization;
13. Persons with lived experience of disability are encouraged to apply

• Working languages
• Languages: English (mandatory), French (desirable, but not mandatory)

1. DURATION AND PLACE OF PERFORMANCE OF THE SERVICE

• Start date: September 2024
• End date: October 2024
• Remote assignment
• Estimated time required:
• 5 days full-time or equivalent part-time
• Tasks are to be completed within 21 days of commencement of consultancy contract.

1. WORK PLAN

• Based on the proposed deliverables included in these Terms of Reference, the consultant should establish a work plan for the completion of the service
• The work plan should give a clear description of how the consultant intends to approach the activities necessary to the service’s completion
• The plan should indicate the rate of progress and/or level of completion of the service, including criteria and indicators for checking that it is proceeding as planned.

1. DELIVERABLES

• Analytical processes to be documented and provided
• Summary tabulations presenting survey analysis, including narrative summary (in-depth narrative not required)
• Data visualizations, graphs, charts on priority indicators and findings
• Submission date: [XX] October 2024
• During the performance of the service, the consultant will be required to work in liaison with Handicap International’s teams, and notably with Ms Brooke Winterburn, Global Inclusive Health Specialist, [email protected], who will be the contact person,