Global Survey on Opportunities for Citizen Data in addressing Infectious Diseases

Introduction

With the support of the Wellcome Trust, the Global Partnership is undertaking a scoping study in order to institutionalize the production and use of citizen data in the response to and prevention of environmentally sensitive infectious diseases, including cholera, schistosomiasis, leishmaniasis, and arboviruses (including dengue and yellow fever).

This survey is intended to collect insights to better understand the opportunities, challenges, and skills-building needs required to institutionalize citizen data for the prevention and response to infectious disease, and the policy priorities thereafter. We also seek to identify organizations that have experience in this area of work as potential partners.

More specifically, this survey aims to:

Identify producers of inclusive data and citizen data
Understand the needs of actors in the infectious disease field that can benefit from inclusive data and citizen data
Identify skills and capacity needs for citizen data use.

This survey is open to anyone who is carrying out work on citizen data, inclusive data or infectious diseases. We are particularly interested to hear from: grassroot organizations, governments, non-governmental organizations, academia, research organizations, networks and communities of practice.

Definitions

Citizen data
Citizen data is defined as data produced by and with sufficient engagement of citizens, communities, civil society organizations and other actors at the design and/or collection stages of the data process, with the aim to inform decision making, responding to specific needs of a community, supplementing existing data from the National Statistical Systems at various levels, or filling data gaps. By sufficient engagement, we mean citizens partner equally with producers of data to share planning and decision-making responsibilities or citizens actively control the entire data process, showcasing collective agency.

Inclusive data
Inclusive data refers to data that is representative, especially of those who are often marginalized, ensuring that data are collected for all people, regardless of their location, ethnicity, gender, age, disability, or other characteristics. Inclusive data goes beyond data disaggregation, looking across the data value chain - from data collection, analysis through to its dissemination uptake and use.

Infectious disease
In this context, we refer to infectious diseases as illnesses caused by pathogens, such as viruses, bacteria, or parasites whose spread, transmission, or severity is influenced by changes in environmental factors and climate patterns. Examples of diseases include cholera, schistosomiasis, leishmaniasis, and arboviruses, such as dengue and yellow fever.

This survey will take ~10 minutes to complete. Your responses are treated with confidentiality and will be reported as part of aggregate quantitative and qualitative analysis. No responses will be attributed to specific individuals or organizations, before obtaining the respondent’s written consent.

Participant profile

Question Title

* 1. Contact details

Name

Country

Organization

Title/Function

Question Title

* 2. What sector do you represent?

Academia/Research

Civil Society/NGO

Donor/Foundation

For-profit/Private

Government

Media

Multilateral

Question Title

* 3. What area does your organization or work focus on?

Producing inclusive and/or citizen data

Public health and infectious diseases

Community health and development

Official statistics

Academia and research

Other (please specify/explain)

Citizen data informing research and policy decisions

Question Title

* 4. Have you used citizen data for researching infectious diseases?

Yes

If yes, please describe how you used the data

Question Title

* 5. In your experience or opinion, how can citizen data influence policy decisions related to infectious disease prevention and response?

Opportunities and challenges

Question Title

* 6. What opportunities do you see in using citizen data for policy making for addressing infectious disease prevention and response?

Question Title

* 7. What issues - ranging from trust, data quality, data governance and financing, etc - are important to you in regards to producing or using citizen data? (Select all that apply)

Budget limitations for acquiring or processing citizen data

Time constraints in finding and vetting alternative sources

Concerns about data privacy and security

Regulatory or policy restrictions on using non-official data

Difficulty in verifying the data's authenticity or reliability

Potential biases in citizen data

Ethical concerns about using citizen data

Limited access to alternative data sources

Organizational culture or resistance to change

Incompatibility with existing data systems or formats

Lack of metadata or documentation for alternative sources

Lack of standardized/harmonized concepts and definitions

Insufficient knowledge of the data collection methods

Insufficient skills or knowledge to produce or use citizen data

Lack of trust in non-official data sources

Lack of relationships with producers of citizen data or with potential users of citizen data

Other (please specify)

Question Title

* 8. What would it take for you or others to accept or use citizen data in public health?

Skill building needs

Question Title

* 9. What skills and capacities are most needed to support the production and use of citizen data in public health policymaking? Please select the most relevant areas for each level.

	Design of citizen data initiatives	Data collection (e.g., surveys, participatory methods, community consent)	Data analysis and interpretation	Data-informed decision-making	Data re-use and sharing	Community engagement and trust building	Other
At the Community level	At the Community level Design of citizen data initiatives	At the Community level Data collection (e.g., surveys, participatory methods, community consent)	At the Community level Data analysis and interpretation	At the Community level Data-informed decision-making	At the Community level Data re-use and sharing	At the Community level Community engagement and trust building	At the Community level Other
At Civil Society / Non-profit Organization level	At Civil Society / Non-profit Organization level Design of citizen data initiatives	At Civil Society / Non-profit Organization level Data collection (e.g., surveys, participatory methods, community consent)	At Civil Society / Non-profit Organization level Data analysis and interpretation	At Civil Society / Non-profit Organization level Data-informed decision-making	At Civil Society / Non-profit Organization level Data re-use and sharing	At Civil Society / Non-profit Organization level Community engagement and trust building	At Civil Society / Non-profit Organization level Other
At Academia/Research level	At Academia/Research level Design of citizen data initiatives	At Academia/Research level Data collection (e.g., surveys, participatory methods, community consent)	At Academia/Research level Data analysis and interpretation	At Academia/Research level Data-informed decision-making	At Academia/Research level Data re-use and sharing	At Academia/Research level Community engagement and trust building	At Academia/Research level Other
At Government level	At Government level Design of citizen data initiatives	At Government level Data collection (e.g., surveys, participatory methods, community consent)	At Government level Data analysis and interpretation	At Government level Data-informed decision-making	At Government level Data re-use and sharing	At Government level Community engagement and trust building	At Government level Other
Other	Other Design of citizen data initiatives	Other Data collection (e.g., surveys, participatory methods, community consent)	Other Data analysis and interpretation	Other Data-informed decision-making	Other Data re-use and sharing	Other Community engagement and trust building	Other Other

If you selected "Other", please explain below

Stakeholders for citizen data and infectious disease

Question Title

* 10. Please list the names of organizations, networks, or other entities involved with citizen data in infectious diseases for each of the following categories. You can list multiple actors for each category, separating them with commas.

Producers of citizen data

Users of citizen data

Skills providers for working with citizen data

Potential beneficiaries of citizen data

Other important actors in the citizen data ecosystem that don't fit into the above categories

Actors (organizations or networks, etc.) that you know of who are working with, building capacity around, or potentially benefiting, from citizen data in infectious diseases.

Citizen Data use cases

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* 11. Please share any examples you have come across of citizen data used in infectious diseases or public health (you may provide links to examples if applicable).

Follow-up

Question Title

* 12. Would you like to receive information and communications from the Global Partnership on this topic and work? This can include focus groups, future events, research papers, blogs and newsletters.

Yes