Valeria Arza and Agustina Colonna

This is the first of two STRINGS blogs which explore features and characteristics of science, technology and innovation (STI) policy and interventions that seem crucial to achieving the Sustainable Development Goals (SDGs): open access and transdisciplinarity and building of local capabilities. The second blog in this series is Part II: Maximising STI impact on the SDGs – local capacity building.

It is no wonder that Chagas disease was included in the list of neglected tropical diseases by the World Health Organization in 2007 (WHO, 2020). Over 100 years have passed since Chagas was first discovered and there is still no appropriate solution to this problem, which mainly affects marginalized communities around the globe.

Chagas constitutes a socio-environmental problem (Sanmartino, 2015) that interacts with several Sustainable Development Goals (SDGs) in addition to good health and wellbeing (SDG 3). For instance, education and access to information is key for prevention; better infrastructure, including roads and hospitals, is important for early detection and treatment; while changes in ecological systems, due to production activities and climate change, have moved the vector (i.e. the kissing bugs that may transmit the disease) towards new, frequently urban, areas.

What is open science, and how can it help?

We define open science practices as those that foster collaboration throughout the research process and/or that openly share the intermediate and final outcomes of research.

Open science literature anticipates benefits in terms of research efficiency and responsiveness to social needs. Efficiency is expected to be boosted through collaboration since more creative, rapid, cost effective responses could emerge due to interaction and expanded participation (Ben-David, 1960; Bonney et al., 2009; Jeppesen & Lakhani, 2010; Nielsen, 2013). Open access to scientific resources across the research community can also avoid duplication of efforts and minimize economic and time costs.

Responsiveness to social needs can be enhanced through collaboration because wider participation in the production of scientific knowledge can better guide the research agenda towards addressing challenges (European Commission, 2016; Hecker et al., 2018; Stodden, 2010). Open access can also help boost responsiveness by increasing visibility (Stodden, 2010) and promoting cheaper solutions to problems.

Given the complex challenges associated with Chagas, and the limited progress that has been made in the last 100 years, it is important to consider how different research  practices can help. With a focus on collaboration and sharing, open science practices offer an opportunity to adopt a truly multi-dimensional approach, increase efficiency and responsiveness and drive progress towards solving the Chagas problem.

Open science in action – an analysis of five Chagas projects

We analyzed five different research projects on Chagas, selected because they had been pointed out as innovative and successful in terms of reaching their goals.[1] They covered the fields of education, epidemiology, biology and medicine.

Three of the research groups recognized being active users of open and collaborative methodologies, while two of them did not identify themselves as part of the open science community. However, all projects opened some of their research practices in terms of access or collaboration to a greater or lesser extent.

We performed 13 semi-structured interviews with project members or users during the second semester of 2019. We found evidence of three mechanisms through which open science may enhance research impact in terms of SDGs.

1. Improving research efficiency

Open science practices improve research efficiency by reducing research time and costs through open access to resources and by extending collaboration based on citizen science practices.

For example one of the selected projects, TDR Targets[2], developed an open access database and computational tool which integrates genomic and chemical data to guide investigations on new treatments against human pathogens. One of its members mentioned that:

“[The TDR Targets open database] will save time and money for researchers who either don’t have the time or don’t have the money to do these kind of activities, especially in poor countries”. 

We found another example of collaboration driving efficiency in Geovin[3], a citizen science project that developed an app for members of the public to submit data about the geographic distribution of the Chagas vector. By using citizen science methodologies to gather data directly from the public, the team was able to build a far more comprehensive database than would have been possible through closed methodologies. One researcher explained:

“This tool allowed us to access kissing bugs in places where we could not go to look for information … we can’t travel across all Argentina looking for kissing bugs”.

2. Making research more responsive to social needs

Projects that adopt collaborative practices and interaction with actors dealing directly with Chagas tend to respond more effectively to social needs.

In the case of Geovin, project members identified social needs and problems through direct interaction with communities, and consequently adapted several aspects of their project.

“The initial motivation was purely scientific. We were looking for data on the distribution of the kissing bug … However, with the use of the app we began to see it as an educational tool …  We saw people needed a rapid diagnosis of whether they were in presence of a kissing bug or not [in most occasions the diagnosis is negative].”

Similar evidence was found in a mostly closed project aiming to develop an early diagnosis kit for Chagas using the Polymerase Chain Reaction (PCR) method to detect congenital transmission in newborns. In the clinical trial phase, when external hospitals and health centers got involved, the project provided a great opportunity to instruct the health personnel on how to systematize their activities to respect sanitary protocols. Thus, through collaboration and interactions with actors outside the research team, such as healthcare professionals, the project improved the quality of health services.

3. Expanding impact to more SDGs

We found that research groups which adopted collaborative practices tend to better identify the multiple dimensions involved in Chagas. This allowed the projects to expand the scope of SDGs tackled through the research and implementation processes, and gave more importance to the SDGs that needed more attention.

This is the case of the group “¿De qué hablamos cuando hablamos de Chagas?”[4] which aims to provide theoretical and practical tools for critical reflection in different educational contexts. In this case, transdisciplinary collaboration with people from different environments gave project members the opportunity to better identify different dimensions through which to tackle Chagas. This was mentioned on many occasions during interviews:

“We see that Chagas is an overly complex problem. If you start “trimming” the problem, you start setting aside [useful] solutions.”

“We wish to generate consciousness that Chagas is one example of complex problems that should be approached in its entirety … offer tools to attack these types of problems from multiple dimensions.”

“During our collaboration with Defensoria del Pueblo, we approached Chagas through the perspective of human rights.”

Another example is the case of Geovin. The original aim of the project was to fill a gap in the data available on the distribution of the kissing bug in Argentina. However, project members mentioned that since the app has been launched, the impact of Geovin has evolved to other areas. Geovin researchers mention two important effects. Firstly, it has had a “calming” effect on the users of the app by letting them know they are not in the presence of a kissing bug in the case of negative results. One team member said:

“We didn’t design it [the Geovin app] for this reason … when we started seeing the information that people sent through the app, we saw it as a tool that makes people calm down rapidly when they mistakenly think they are in the presence of a kissing bug.”

Secondly, it had an educational effect because citizen science gives researchers a tool to easily reach the population, which can be very important in education on Chagas prevention. The citizen science (collaborative) methodology is essential for creating these spillovers as it allows for close contact with the population to communicate important information and precautions for Chagas prevention, which would have been impossible through a closed approach.

Another mechanism through which impact was expanded to more SDGs was originated by open access practices, creating synergies towards new SDGs. For example, the TDR project had an indirect economic effect by providing open access datasets for researchers from underdeveloped regions who do not have the resources to perform this type of data-intensive tasks themselves. In this sense, the project has had an equalizing effect, helping to bridge the gap between different scientific communities by providing researchers with these valuable resources. As one interviewee put it:

“[M]any of these [parasite] genomic projects had an indirect economic impact … and even though most scientists would like to do large-scale genome analysis using computational biology tools, they often don’t have resources at hand to analyze these datasets. So, for people who don’t have the resources and for people who don’t have the expertise, databases like TDR Targets makes it easier for them to not only access the data but also do the analysis.”

In summary, Chagas problems are multi-dimensional and solutions must be integrated, as recognized by most of the stakeholders we interviewed. Our case study provides further evidence on how scientific production could contribute more effectively, efficiently and in a wider scope towards the SDGs if it adopted a more open and collaborative approach in which diverse knowledge, experience and actors take part.

Footnotes

[1] We interviewed seven key informants during the first semester of 2019.

[2] See tdrtargets.org and Urán Landaburu et al. (2019)

[3] See http://geovin.com.ar/ and Basalobre et al. (2019)

[4] See https://hablamosdechagas.org.ar/ and Sanmartino (2015)

References

Balsalobre, A., Ceccarelli, S., Cano, M. E., Ferrari, W. A., Cochero, J., & Martí, G. A. (2019). Apps en el desarrollo de ciencia ciudadana: GeoVin. I Jornadas de Inclusión de Tecnologías Digitales en la Educación Veterinaria, La Plata.

Ben-David, J. (1960). Roles and Innovations in Medicine. American Journal of Sociology, 65(6), 557–568. https://doi.org/10.1086/222786

Bonney, R., Ballard, H., Jordan, R., McCallie, E., Phillips, T., Shirk, J., & Wilderman, C. C. (2009). Public Participation in Scientific Research: Defining the Field and Assessing Its Potential for Informal Science Education. A CAISE Inquiry Group Report. In Online Submission. Center of Advancement of Informal Science Education (CAISE). https://eric.ed.gov/?id=ED519688

European Commission. (2016). Open innovation, open science, open to the world—A vision for Europe.

Hecker, S., Bonney, R., Haklay, M., Hölker, F., Hofer, H., Goebel, C., Gold, M., Makuch, Z., Ponti, M., Richter, A., & others. (2018). Innovation in citizen science–perspectives on science-policy advances. Citizen Science: Theory and Practice, 3(1).

Jeppesen, L. B., & Lakhani, K. R. (2010). Marginality and Problem-Solving Effectiveness in Broadcast Search. Organization Science, 21(5), 1016–1033. https://doi.org/10.1287/orsc.1090.0491

Nielsen, M. (2013). Reinventing Discovery: The New Era of Networked Science. Princeton University Press.

Sanmartino, M. (Coord. ). (2015). Hablamos de Chagas. Aportes para (re)pensar la problemática con una mirada integral. Contents: Amieva, C., Balsalobre, A., Carrillo, C., Marti, G., Medone, P., Mordeglia, C., Reche, V.A., Sanmartino, M., Scazzola, M.S. Consejo Nacional de Invetigaciones Cientificas y Tecnicas (CONICET).

Stodden, V. (2010). Open science: Policy implications for the evolving phenomenon of user-led scientific innovation. Journal of Science Communication, 09(01). https://doi.org/10.22323/2.09010205

Urán Landaburu, L., Berenstein, A. J., Videla, S., Maru, P., Shanmugam, D., Chernomoretz, A., & Agüero, F. (2019). TDR Targets 6: Driving drug discovery for human pathogens through intensive chemogenomic data integration. Nucleic Acids Research, gkz999. https://doi.org/10.1093/nar/gkz999

WHO. (2020, March 11). Chagas disease (also known as American trypanosomiasis). https://www.who.int/en/news-room/fact-sheets/detail/chagas-disease-(american-trypanosomiasis)