Master of science thesis for the degree of Strategic Product Design
at Technology University of Delft
Explore the untapped digital data of
neglected tropical disease, and provide insights for stakeholders to take strategic actions.
Supervisory team: Dr. ir. Diehl, J.C. / Dr. Bourgeois, J.
Abstract
People have been using the digital technology domain to seek solutions to combat neglected tropical diseases. Aside from feasibility and effectiveness, WHO has pointed out the importance of having an overview that pinpoints the lacking infrastructure for scaling up and sustaining digital proposals. This research demystifies the untapped digital data in combating neglected tropical disease and aims to provide an overview for people to take strategic action. Who are all the stakeholders in this elimination procedure? What are the needed data to tackle this disease? How can digital innovation best interfere with the current disease elimination flow?
The researcher has chosen the content of Kanya and the neglected disease of Schistosomiasis as the subject. Building on numerous expert interviews and the literature review, the footprint of disease combating related data has been systematically analyzed from different angles. With a holistic view, this series of analyses poses as a step-by-step guide for the strategic planning of complicated neglected disease or health-related issue in low-resource setting countries. An example of a new Schistosomiasis diagnostic device, SODOS, is presented at the end to showcase the effectiveness of the analyzing approach.
1
Background -
The triggering of this research
Schistosomiasis, also known as bilharziasis, is caused by parasitic water-borne worms. It is a neglected tropical disease (further referred to as NTD) that infects over 200 million people worldwide, making over 650 million people at risk. (Nour, 2010).
For disease surveillance, there is often urgent requirements to detect and intervene at a rapid pace. Diagnostic and monitor can be key to clinical management, especially for infectious disease, as it can be transmitted to others if action is not taken in time (Fallah, 2017). Compared to other diseases that can be easily spotted by symptoms or patients’ medical records, governing neglected tropical disease such as Schistosomiasis, in which the characteristics of the disease may obscure factors for digital data collection (Walz, 2015), level-up the challenge of monitoring. Take Schistosomiasis as an example, data collection for tracking disease epidemic area may substantially reflect the biometric trait of the parasite, living habits of snails, or behavior of humans; however, these data still falls short of setting up risk profiling for Schistosomiasis prevention and control. The characteristics of each neglected disease, as well as its complexity in the cause, increase the difficulties in digitalizing the controlling procedure (Walz, 2015).
Worldwide geographical distribution of schistosomiasis in 2010 (WHO, 2013). More than 207 million people are actively infected by schistosomal globally. (King, 2009)
The life cycle of Schistosoma species (Ross, 2002).
the egg of Schistosoma under the microscope. Schistosoma eggs can be recognized by the oval shape and the terminal spine at the end. Top: egg detected for Schistosomiasis Haematobium. Down: egg detected for Schistosomiasis Mansoni. (YourGenome, n.a.)
2
Opportunity and methodology
For the disease Schistosomiasis, the golden guideline has been set by WHO to optimize procedures for ending Schistosomiasis; however, local people living in the disease prevalent areas are still coping with limited resources when performing the controlling program.
For digital health data, even though people started to take the convenience of digital data as granted, the usage of digital health data is still strongly dependent on infrastructure (including data management system), the connected chain interaction that comes after the data is gathered. The digital divide, however, is an even more challenging when it comes to infectious disease, not to mention the situation of neglected infectious disease.
Health interventions via mHealth have been focusing on feasibility and effective, instead of elaborating on the overview, which pinpoints the lacking of specific infrastructure for scaling up and sustaining the digital proposal (WHO, 2015). There is a limited understanding of what is needed to translate these good intentions into larger-scaled long-term practical planning.
Therefore, before further examining how data can assist the elimination of Schistosomiasis digitally, it is necessary to take a step back and look at how and what data is generated in the Schistosomiasis’ disease controlling procedure.
Combating disease is a team activity. This thesis used the metaphor of a "relay race running" to describe the disease eliminating procedure. Stakeholders are described as runners in the game; data are described as relay-batons; the overview is described as the running track.
Research Topic:
Explore the untapped digital data of neglected tropical disease (NTD), and provide insights for stakeholders to take strategic actions.
Goal of the project (deliverables):
1. Demystify the footprints of data within Schistosomiasis’ elimination procedure.
2. Streamline the complex situation to facilitate and encourage people in strategically making sustainable interventions.
3
The Elimination Backstage -
backbone built by the stakeholders
Health strategies, planning, and policies are more likely to get implemented effectively if all related stakeholders are involved in the development, discussion, and execution (WHO). Stakeholders of the disease controlling process may include government, non-profit or non-governmental organizations, community groups, political parties, UN agencies, the private sector, health care providers, and national parties when support or collaboration is needed.
As a disease that is likely to cause infection within its neighborhood, the relationship between players is fundamental to achieving elimination. In this chapter, the researcher will examine each stakeholder and the stakeholder’s contribution to the whole picture of Schistosomiasis disease elimination, to puzzle out the overview.
Each country designs and develops the structure of Schistosomiasis disease controlling procedure per a country’s social structure, needs, and resources (White, 2015). Despite all the differences, common elements can be seen. Decision-makers at all levels have an obligation to identify different factors that have an influence and formulate appropriate strategies that will guide them towards their ultimate vision.
To explain the Schistosomiasis controlling situation, Kenya is used as an example in the research.
Players involved in Kenya’s Schistosomiasis controlling procedure
- The polar of the X-axis for mission: Humanitarian action and development activities.
Humanitarian action is focusing on short term relief until a long-term solution arrives. It is focusing on solving immediate needs and is often reactive, development actions, rather than short term response, it is focusing more on long term impacts. Targeting is usually the root cause of a problem; development actions are more proactive. The results may also come slower in pace.
- The polar of the Y-axis for vision: Focused view and holistic view.
The stakeholder that has holistic vision takes into consideration multiple relationships and elements in the complex system. Instead of static snapshots, they prefer to see the patterns of change and the interrelationship between phenomenon. In comparison with the holistic view, the focused view has a simpler objective and often aim to know the situation in a down to earth manner. The focused view is the foundation to have a holistic view, while the holistic view may have a bigger impact than a focused view.
Bipolarity axis of stakeholder’s mission and mission. The X-axis indicates a stakeholder’s mission; Y-axis indicates a stakeholders' vision.
The researcher takes Kenya’s Schistosomiasis controlling situation as an example in explaining the role and task of these stakeholders.
Each stakeholder plays a piece of the puzzle in the picture of Schistosomiasis disease elimination procedure.
Illustration of how people all over the world devote their effort in this picture of Schistosomiasis disease elimination procedure.
The left circle: Standard flow -- all about time, schedule, and responsibilities
Stakeholders in the standard flow tend to have a distinct division of powers and functions. Starting from the routine planning of MDA, a schedule can be completely expected in this cycle. Based on the guidelines provided by the WHO, each government customizes its MDA based on their country’s situation to ensure efficiency. Division of responsibilities between stakeholders can be established.
Starting from “planning” on the upper left corner, WHO together with KEMRI and Kenya national government forms the ‘steering committee’ and conduct planning to implement the WHO NTD guidelines.
PLANNING
The province government and community workers join KEMRI in undertaking the MDA as well as survey sample testing during the whole MDA procedure. The province government ensures the security and the community worker help sensitize the citizens before and during the MDA.
TAKE ACTION
Urine samples are processed and examine at local labs from the health facilities. Technicians help process the samples and document the results.
ANALYSIS
The information collected in the previous analysis step forms the disease prevalence. The results are documented, and the funder is notified of the results. The yearly result will be saved and compared to examine the effectiveness of the controlling program. To show that the provided resources are properly implemented, reporting will happen at this stage.
MONITOR
The right circle: Non-standard flow -- all about discovering and predicting
In comparison to a hierarchical relationship, mutual experience, exchanging, and influencing is more common in a non-standard flow. Action may happen irregularly without a fixed schedule, depending on the purpose of the project.
ADVICE FOR IMPROVEMENTS
The published results from the advanced analysis will turn into input for global organizations like WHO to develop guidelines and adjust roadmaps for the future. The parties outside the local field will be invited to assist global conference and seminars, which have a high possibility to influence future planning to reach the goal of a better world.
Parties like international research institutions, agencies, and foundations process advanced analysis to assist in future planning or strategy adjustment. Annual reports from epidemic countries, as well as related papers published, can be sources for this research. The advanced analysis can cover information from modeling for predictions, vaccination, and antigen development, to human behavior study
ADVANCE ANALYSIS
Conclusion
Despite the common goal of detecting, preventing, and controlling the epidemic of Schistosomiasis, all players are given responsibilities and commitments at different levels. Thus everyone can play a complementary role.
As mentioned previously, Schistosomiasis is a disease that is likely to cause regional infection. The controlling of such a disease requires joint endeavors from medical and hygiene to education and infrastructure. It can be hard for stakeholders to stay out the issue when talking about helping rid the area of Schistosomiasis.
Having such an overview of stakeholder, on the one hand, helps those who are not in their position to have a closer feeling of other’s key performance indicators and, on the other hand, encourages each stakeholder to realize how important he or she can be in his or her current position.
4
Data -
the product and catalyst of good intention
The success of Schistosomiasis is related to the solidarity of stakeholders. The expertise and focus of each party increase the value of experience and knowledge exchange, which is of vital importance in supporting the activity happening in each phase.
Data act as important catalysts and evidence in treatment recommendations and policies (WHO, 2015). The orchestrating of the data can act as a significant additional resource to help stakeholders in the picture in creating a multiplying effect on the effort they have made when seeking new opportunities for improving disease elimination strategies.
Based on the available evidence, including the analysis in the previous chapter and interview results gathered from the visits made to various stakeholders and conferences, the research will be analyzing the data that links all the stakeholders together.
For the analysis the expert interview results from the following stakeholders are consolidated:
- Community workers:
Country Coordinator & Communication Advisor from Healthy Entrepreneurs
- NGO:
Design Lead from MSF (Doctors without borders)
- Local Medical research institution:
Chief Research Officer and Assistant Director of Partnership and Collaboration from KEMRI (Kenya Medical Research Institute)
- International medical research institution:
Research Scientist at EMC (Erasmus Medical Center)
The following eight groups of data are principally synthesized and condensed by making reference to the study on “risk factors” that can influence the transmission ecology of Schistosomiasis and “remoting sensing data” for Schistosomiasis risk profiling. See full report for the full assessed factors and data list of the previous research.
From the context analysis to the research of the parasite, the following eight groups of data is considered as the essential material (input) or result (output):
country-related data, infected area related data, citizen-related data, medical staff-related data, diagnostic result-related data, parasite-related data, resource-related data, other abstract qualitative data.
Tool cards are used to sensitize interviewee in recalling their working procedure. (see full report)
Through the interviews, the researcher found overlapping in the requesting of the data type. However, due to the difference in the role of stakeholders and the different stages that they each take actions, the same data may be used differently, at a different degree, or for a different purpose.
Functional aspect makes data into useful information. Having a well-defined view of the main purpose for collecting data can help direct future innovation (Akvo). Based on the position and role of each interviewee (discussed in the previous chapter), it is possible to cross-reference and correlate the response in finding patterns of the reason for collecting the data.
1. Planning: allocate resources, assist decision making, plan schedule, distribute jobs, and clarify the goal.
2. Action taking: ensure a smooth operation, track progress, and be ready to redeploy funder exceptional circumstances.
3. Analyzing: conduct result and ensure accuracy.
4. Monitoring: check the effectiveness, monitor progress, report results, and further
propose a direction for improvements.
5. Advance analyzing: provide sufficient variables for research liability.
6. Advising: adjust future steps based on experience, expert advice, and research predictions.
The main purpose of data collection in each phase of the disease controlling process.
As a whole, the purpose of data collection can be seen aiming for the near or far future. Taking action to eradicate worms in people’s body can be seen as the one closest to the immediate basic needs. The results gathered from the field act as the foundation for advance analyzing, which prods for the root cause and aim to seek impact in further research. The process of advising and planning then implementation allows for future preparation and creates a possibility of ta disease-free ideal world. This phenomenon also is in line with the X-axis for stakeholder mission previously discussed
The main purpose of data collection in each phase of the disease controlling process.
1. Country and resource-related data are most needed during the MDA planning phase.
2. Citizen and medical staffs related data are most needed during the conducting of MDA and survey sample testing.
3. Diagnostic results and the information of the Schistosoma parasite is essential throughout the entire disease controlling process. These two types of information also play a key role in the stage of sample diagnostic and advanced analyses.
4. IInformation on disease infected areas has a crucial role to play in the routine controlling cycle (left). Opinions and concerns regarding frustrations and advice can occur at all phases. Compared to the other six types of data; by comparison, these two are uniformly distributed.
Conclusion
Data can be multi-relational. A certain type of data can be considered as the output of one party but used as an input for the other one. After screening out the commonalities in data, and streamlining them in the current disease controlling procedure, the data footprints in this chapter can assist us in further understand the following two aspects:
- The main purpose of collecting a certain type of data.
- What data is most needed in supporting the activity.
5
Demystify digital data footprints in Schistosomiasis disease controlling process
The operational relationship between all these different parties that assist the performance of the Schistosomiasis controlling process pose as the vital influence in building the entire system. Data, which can form into meaningful pieces of information, can be seen as the product that reflects performance in each stage; data can also act as a key catalyst in strengthening the scientific disease controlling approach. By combining these two aspects, the researcher will integrate the overall relationship between the stakeholders and the data that flow between these components.
Through the discussion of the map, the untapped digital data that reflect gaps in the current Schistosomiasis elimination situation will be presented at the end of this chapter, the aim is to exploit these rich sources of information to find further information regarding how the current approach can be improved. It is important to note that the map of data footprints presented in the chapter should be a work in progress. Regular updates and inputs will help keep the mapping of data flow up-to-date and thus complete.
Together with the influential level of healthcare (from the community level to supranational level) (on the left column), the relation between each stakeholder is mapped. Again, despite the situation differently in different countries, the map is currently illustrated based on the Schistosomiasis controlling situation in Kenya.
With this brief view, loops and cycle can be seen. Urine survey samples that carry the health situation of the citizens in the epidemic areas can be seen as the beginning of the cycle.
Starting with the urine survey samples that carry the health situation of the citizen in the epidemic areas, are the original forms of a great deal of information, which is either translated to different kinds of input or motivate the collection of other data. Via stakeholders at the country level, data are then spread to all kinds of parties. Players on the international level are relatively diverse. They are all interested in the latest disease situation, but in response takes a different action. The directions of information flow can be thus seen generally going upward, and then back again from the supranational level to the country level before influencing the local field.
The interaction can be seen happening at a different frequency. From year information flow such as the annual drug administration, up to strategy roadmap planning that renews every ten years.
A. Country-related data:
Country related data that can assist the controlling procedure includes population, gender ratio, migration rate, and literacy rate. These data are brought together and managed mostly by the government.Stakeholders that play an important guiding role in MDA or survey testing procedure are more likely to find country-related data essential for their task, while other stakeholders might not keep such a close view on this type of data, as the figure of country-related data takes a longer time to change.
B. Infected area related data:
Infected-area-related data are derivatives of the disease prevalent survey testing. Data that are considered to be part of the group are location, weather conditions, and population. Compare to country-related data that are on a general level; infected area-related-data are relevant to stakeholders that have a more narrowly focused on the Schistosomiasis projects or program. MDA and survey results are the main channel of thedata, the frequency of infected area related data thus comes along with the scheduling of these field activities.
C. Citizen related-data:
The adherence of synthetic anthelmintic drug, praziquantel, has recently been called into question when discussing the hurdles of disease elimination. These data, for example, are currently beyond the list of reporting. Stakeholders working towards the community level are more likely to have access in these non-officially-reported messages. Stakeholders at the international level have begun to be concerned about citizen related data due to their interest in Schistosomiasis disease controlling on the individual level.
D. Medical staff-related data:
Medical staff-related data is useful for the planning of survey testing. Relying on manual operation of microscopic egg count, the number of medical staff, who are also related to the workload of medical staff, is of vital importance to the efficiency of the urine sample processing procedure.
E. Diagnostic related data:
Diagnostic-related data can be considered as one of the most critical data, as it concerns the determination of the controlling situation of Schistosomiasis. According to the situation in Kenya, urine testing happens once every other year (every two years). Diagnostic related data is requested by the WHO to monitor the disease. Together with such data from multiple countries, WHO can create an overview of Schistosomiasis controlling worldwide, as well as share the overview to other stakeholders for assessments and research.
F. Parasite related data:
The research of Schistosoma and Schistosomiasis can be rather complex. International research centers comprise the advanced research, which will be shared with local research institutions and WHO for advising on approaches to end the disease. Related parasites will be taken into consideration when field activities (MDA, survey testing) are planned. Advanced researching and advising, do not have a fixed schedule.
H. Other data:
Frustrations, advice, opinions, and concerns can occur at all phases from every stakeholder. Meetings and conference may be the most direct way to discover these data. There is currently no shared platform in gathering these qualitative data, as such data can be rough, unpolished, and hard to sort out its interwoven relationships. Despite these facts, answers to hard to solve questions, such as trust issues of citizens and difficulty in promoting policies, may lie in these not yet codified data.
G. Resource related data:
Resources act as the most critical aspect that indirectly affects the controlling of Schistosomiasis. Resources will be gathered and managed at the national level. Based on the disease controlling situation reported by the country, WHO will be providing the donated drugs to each country. Stakeholders that support the fighting of Schistosomiasis will also be providing resources in response to the reporting of the controlling conditions, which happens mostly yearly with the occurrence of the MDA.
Gaps and drawbacks -- The implied hint to geared up digital data effectiveness
Immediate update and rapid synchronization make digital data “alive.” With the advance of technology, the lively and flexible aspect of digital data empowers people to make “need” a priority, instead of communicational constraints. Following are the four problems identified from the research, including the unfulfilled need of stakeholders, blindspots of system, and the shortage of resources (including data as an input). It is inescapable to imagine how digital data can take part in easing these current frustrations. Mainly focusing on how data between stakeholders can be more effectively utilized, these problem definitions pinpointed aspects that are awaiting improvement.
Problems statements derived from the gaps seen in the mapping. See full report for further explanation of each frustration in the current disease elimination procedure
Conclusion
From recognizing players in the field, understanding their offering, creating an overview via the commonly used data, adding in the layer of time and information flowing direction, to capitalizing the hidden opportunities for future improvements, via these series of graphs, the researcher demonstrated how data in the elimination of Schistosomiasis are used and further transformed into useful information and knowledge.
With “data” being the major role of discussion, individuals can understand how data were processed into information by answering the following WWWWWH with a logical view:
From data to information and from information to knowledge, the context presented above are expected to act as a tool to assist people with aspirations of making changes in understanding the current situation around them and to further make strategic decisions for their next step.
Check the following links for full report, which includes in-depth research, application of the data tool, validation, limitation, future recommendations, interview guide, appendix, and reference of this research.
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