Appendix A - Quantitative Survey Instrument
Systems Analysis of Global Efforts to Eliminate Neglected Tropical Diseases NTD Network Survey
1 Which of the following best describes the current relationship between your organization and each organization on the list?
*This question is specifically referring to work on the five preventive chemotherapy NTDs (soil-transmitted helminths, schistosomiasis, lymphatic filariasis, onchocerciasis, and trachoma). Please think only about the relationship between your organization and the other organizations as it relates to these diseases.
1 Unlinked (We do not work together at all) 2 Communicative (We share information) 3 Cooperative (We share information and work together when an opportunity arises)
4 Collaborative (We work side-by-side and actively pursue opportunities to work together as an informal team, i.e. attempt to find ways to work together but do not establish a formal agreement or contract)
5 Partnership (We work together as a formal team with specified responsibilities to achieve common goals, i.e. have formally identified common goals and areas of responsibility for each organization)
2 Which of these organizations do you consider to be the most important in efforts to control and eliminate NTDs? (select up to 5)
3 Which, if any, organizations that work directly on NTDs that are NOT on the list do you consider to be important in efforts to control and eliminate NTDs? (write up to 5)
3b Which of the following best describes the current relationship between your organization and each organization you mentioned that is NOT on the list?
1 Unlinked (We do not work together at all) 2 Communicative (We share information) 3 Cooperative (We share information and work together when an opportunity arises)
4 Collaborative (We work side-by-side and actively pursue opportunities to work together as an informal team, i.e. attempt to find ways to work together but do not establish a formal agreement or contract)
5 Partnership (We work together as a formal team with specified responsibilities to achieve common goals, i.e. have formally identified common goals and areas of responsibility for each organization)
4 Which, if any, organizations *NOT currently working directly on NTDs do you consider to be important in efforts to control and eliminate NTDs? (write up to 5) 4b Which of the following best describes the current
relationship between your organization and each organization you mentioned that is NOT on the list?
1 Unlinked (We do not work together at all) 2 Communicative (We share information) 3 Cooperative (We share information and work together when an opportunity arises)
4 Collaborative (We work side-by-side and actively pursue opportunities to work together as an informal team, i.e. attempt to find ways to work together but do not establish a formal agreement or contract)
5 Partnership (We work together as a formal team with specified responsibilities to achieve common goals, i.e. have formally identified common goals and areas of responsibility for each organization)
5 What do you consider to be the major barriers to more effective collaboration among the organizations working to control and eliminate NTDs?
6 Do you have anything else to say about collaboration among organizations to control and eliminate NTDs?
Appendix B - Interview Guide
Systems Analysis of Global Efforts to Eliminate Neglected Tropical Diseases Key Informant Interview Guide
Goals of Key Informant Interviews:
to identify structural factors that explain why NTDs persist as a major public health problem
to understand the interconnected patterns of relationships between the structural elements (i.e. policies, rules, goals, beliefs, assumptions, etc.) of the NTD system
to explore the influence of factors such as political priority, resource mobilization, and program integration on efforts to control and eliminate NTDs
Thank you for your willingness to participate in an interview about your opinions on current efforts to control and eliminate neglected tropical diseases. This interview will focus on the five Preventive Chemotherapy NTDs: lymphatic filariasis, onchocerciasis, schistosomiasis, soil-transmitted helminths, and trachoma. There are no right or wrong answers to these questions. This is not a test of your knowledge, and if you do not have an answer to a specific question that is okay. You can skip any questions you want, and you can end our conversation at any time. I will take notes, and if it’s okay with you, I would like to audio record, so I can focus more on our discussion and fill in my notes later. If you don’t want me to record or want to stop the recording at any time, that is completely okay, just let me know.
A. Do I have your permission to audio record? O Yes O No (TURN OFF AUDIO RECORDER)
Because these interviews are intended to help us understand the perspectives of different stakeholders, it would be very beneficial if you’re willing for your name to be attached to your responses.
B. Do I have your permission to include your name with your responses in reports or other publications associated with this study? O Yes (SKIP TO QUESTION C) O No (SEE BELOW)
I. Do I have your permission to include your name with your responses in discussions with other stakeholders about the data but not in written publications or formal presentations? O Yes (SKIP TO QUESTION C) O No (SEE BELOW)
II. Do I have your permission to include your name with your responses in discussions within the study team, which includes the END Fund? O Yes (SKIP TO QUESTION C) O No (SEE BELOW)
III. Okay, I can assure you that neither your name nor the name of your organization will be linked to any information you provide.
C. Do you have any questions before we get started?
D. Do I have your permission to begin this interview? O Yes O No (THANK RESPONDENT & STOP HERE)
Background (5 MIN)
If it’s okay I’d like to start off with some background information…
1. Do you mind giving me a quick summary of your organization’s approach to addressing the five PC NTDs? 2. What is your job title and role within the organization?
3. Previous to your work with this organization what, if any, experience did you have with NTDs?
Challenges and Opportunities (30 MIN)
Now, to talk bit about the successes and challenges around addressing NTDs…
4. What are one or two ways in which your organization (or organizations you’ve worked with previously) has had the biggest impact in its efforts to control and eliminate NTDs?
Probe:
i. Can you talk a little more about this work? ii. Why was this such an important success? iii. What factors enabled this success?
5. Thinking more broadly than your organization, what would you say are the most important successes over the past five years in efforts to control and eliminate NTDs?
Probe:
i. Why was this such an important success? ii. What factors enabled this success?
6. Can you think of any examples of NTD control and elimination activities from your own work or that of other organizations that you were optimistic about but that ended up failing (or that didn’t achieve the expected results)?
Probe:
i. Why do you think this failed?
ii. What would you change if you were in charge of trying this again? iii. What have you learned from failure? (added 12/8)
iv. Does the NTD community learn from failure? (added 12/8)
7. In your opinion, what are the main reasons that NTDs persist as a public health problem?
Probe:
i. Why do you think this is a problem? ii. What causes this problem?
iii. How would things be different if this problem were solved? iv. What would it take to solve this problem?
v. Any other main reasons?
8. What changes (policy, technology, programs, or other areas) if made, would have the biggest impact on reducing the burden of NTDs?
Probe:
i. What would need to happen for this change to occur? ii. Who, if anyone, would disagree with you about this? iii. What about changes in assumptions or beliefs?
9. What, if anything, is not yet known about what is needed to control and eliminate NTDs?
Partnerships (10 MIN)
10. In thinking about the many different stakeholders working to control and eliminate NTDs, in what ways, if any, is collaboration going well?
Probe:
i. Why do you think collaboration is going well?
ii. What have the results been from this strong collaboration? iii. What factors are facilitating strong collaboration?
11. In what ways, if any, is collaboration going poorly?
Probe:
i. Why do you think collaboration is going poorly?
ii. What have the results been from this poor collaboration? iii. What factors are impeding better collaboration?
iv. What type of disruption or challenge would you introduce into the community? (added 12-15-17)
Political Priority – Optional (5 MIN)
12. How much attention do you think NTDs receive from decision makers and policymakers in endemic countries compared with other public health issues?
Probe:
i. What makes you think this? ii. And at the global level?
13. Why do you think NTDs receive the amount of attention they do?
14. What actions could be taken to increase the level of political attention for NTDs?
Resource Mobilization – Optional (5 MIN)
15. What, if any, potential sources of funding for NTD programs do you think have not been fully utilized? 16. Why do you think these funding sources have not contributed more for NTDs?
17. What actions could be taken to increase the funding dedicated for NTDs?
Integration – Optional (5 MIN)
18. Many people talk and write about the importance of ‘integration’ in order to control and eliminate NTDs. What, if any, types of integration do you think are important?
Probe: i. Why?
ii. How have the SDGs impacted the NTD space (added 12-13-17) 19. In what ways, if any, can integration enhance NTD control and elimination efforts?
Probe:
i. How does integration enhance these efforts?
20. In what ways, if any, can integration impede NTD control and elimination efforts?
Probe:
i. How does integration impede these efforts?
Conclusion (2 MIN)
21. Is there anything we haven’t discussed regarding systemic issues around addressing NTDs that you want to mention?
22. Who would you recommend I speak with who would come at these issues from a different perspective? (added 12-15-17)
23. I have one more request that’s important to this study. As a key component in understanding the structure of the NTD system, we are conducting a network analysis survey that we would like you or someone else from your organization to complete electronically. It should take about 20-30 minutes. Would you mind responding to this survey that I will send in a follow-up email?
I really appreciate you taking time for this interview. It’s been extremely helpful to hear your perspective on these issues. Please don’t hesitate to reach out to me if you have any questions.
Appendix C - Fishbone Diagram of NTD Problem
Appendix C shows a fishbone diagram with root causes of the NTD problem compiled from the fishbone diagram group exercise during the END Fund systems change workshops. These causes were identified as important variables in the NTD system and were later expanded on to develop a full list of inhibitor variables.