Christos Vlasakidis – DDRN

Sustainability Without Lab Coats: Citizen Science in Service of the SDGs

Christos Vlasakidis — Tue, 21 Nov 2023 09:27:47 +0000

Enlisting the Public

The universality of the themes covered by the SDGs speaks to the fact that there is not only space, but also interest, for the public to participate in the work towards the SDGs; contributions “through the involvement of everybody, not just the usual suspects like the government organisations or the research bodies”, as put by Dr. Mohammad Gharesifard, assistent professor of Citizen Science at the University of Groningen.

Citizen Science (CS), a mode of public engagement where members of the public actively participate in the research process, has been gathering momentum in recent decades, as a promising approach towards democratising science; an inclusive way to escape from the elitism of which science is so often accused. Due to their empowering potential, multiple CS projects have sprung up, such as the Ground Truth 2.0 project, in which Dr. Gharesifard was directly involved. The project, which operated in six different countries, aimed at establishing ‘citizen observatories’; networks of stakeholders (including members of the community) using technology and sharing information to monitor their environment. The project constitutes just one of the many examples of citizen science.

Such initiatives equip interested members of the public with tools and knowledge to play their part in (natural/social) science research, for instance by collecting data. The themes of such projects also tend to revolve around issues that affect the citizens, ranging from tracking biodiversity, and monitoring air and water quality, to public involvement in setting the agenda for urban development projects. Looking at the foci of CS projects, one notices that they are not simply topics of abstract research; they tend to be pertinent issues related to the environment around the participating citizens. The link between the themes of CS projects and sustainable development issues is strong, and these themes often overlap with those of the SDGs.

Grassroots Data

In the spirit of substantive action and evidence-based practice, numerous indicators exist for each of the 17 SDGs to monitor progress and evaluate the work towards achieving them. A substantial and consistent flow of data is, naturally, necessary for making informed assessments towards these indicators.

But generating and collecting such a large set of data is not easy, especially when this monumental task is formally allocated exclusively to certain organisations. Organisations such as governments and national statistics offices are relied upon to be the sole ‘pump’ through which the necessary stream of data flows. This is a substantial demand, and these sources are proving to be insufficient.

Their inadequacy seems to necessitate that new, non-traditional data sources be utilised, as argued in a study on the interface of CS and the SDGs, and CS initiatives perfectly fit that niche. In the words of Dr. Gharesifard, “with citizen science you actually have a complementary source of information to measure the SDGs. So that is one of the beauties of citizen science; in parts where we have a lack of data, we can perhaps cover it.”

However, this raises an important consideration: How to strike the right balance between taking advantage of CS data towards the SDGs, while keeping the official bodies accountable for fulfilling their obligation of effective and accurate tracking of the progress towards the SDGs.

Currently, CS projects are already contributing to some of those goals, with the potential to contribute to even more. In total, such initiatives can contribute to up to one third of all the different indicators that are used to demonstrate progress towards the various SDGs, as per a 2020 paper mapping CS contributions. These contributions are heavily put in service of ‘monitoring’ the SDGs – checking the progress against the different indicators – but the potential for contribution extends to achieving them as well: “We can discuss the SDGs and citizen science in this dichotomy of monitoring and achieving”, says Dr. Gharesifard.

Crossing Continents

While the citizens involved are often local to the area, the relevance of the issues they tackle can be global. And even if the individual cases are area-specific, the objective of citizen science – the involvement of the public – can find its place across borders. It is no surprise then that many CS projects involve collaborations between multiple countries across continents.

Ground Truth 2.0 was such an example; a 3-year project running from 2016 to 2019 that set up and studied six citizen observatories, including two in Africa (Kenya and Zambia). “The idea was to really co-create these citizen observatories; not to go there with a tool that is already developed, but with a blank canvas, if you will, and start with bringing all the stakeholders around the table to first discuss the issues and only then come up with tools or solutions for how to tackle these issues with public participation through citizen science”, says Dr. Gharesifard, who was involved in the project, specifically referring to the Kenyan case.

However, the canvas with which the team arrived in Kenya was not completely blank. Since the area where the observatory was to be set up was near the Maasai Mara National Reserve, Dr. Gharesifard and the team thought “ok, perfect case for biodiversity monitoring. We go there and we develop an app, perhaps, that tourists can use when they go on these safaris to basically count animals […] so we can have a better count of the state of biodiversity in this reserve”.

They started by organising a session bringing stakeholders together; representatives from the county and the national government, the University of Maasai Mara, and local citizens. A diverse sample of stakeholders, but not representative since, as Dr. Gharesifard admits: “We couldn’t engage everybody, only those who could speak English, so it was not really a representative sample. But we tried to engage a very diverse group and we did our best.”

“The session started and we tabled the idea” he recounts. “The county government was actually very much in favour of the idea, they really liked it. But the local people actually started telling us that this is not the full picture. They explained that, although conservation of the animals in the national reserve is an important focus, it ties to more pertinent issues; some of these animals, such as lions and leopards, can often wander off the reserve and attack grazing herds, on which many members of the community depend for their livelihoods. The message was clear: ´the more important thing for us is our livelihoods and not counting animals´.”

With the priorities of the citizens clearer, the theme of the project changed and evolved to include the information that the community was actually interested in. Dr. Gharesifard explains that they had to “refocus the idea on basically a balance between conservation and livelihood management”. “So, besides what type of animals you see [and] whether you see a case of conflict that you can report”, he continues, “they could share various information about water sources that they could take the cattle to, or perhaps better pastures outside of the conserved areas. And also things like prices for cattle etc.”

Finally, he adds one further major change to their initial idea: They completely dropped the idea of focusing on the engagement of tourists “because we realised that there are more important stakeholders to engage at the moment”. The next step was to develop the necessary tools to carry out the project. The team, researchers and citizens, started to work on co-creating an app where people could submit and share all this information.

The combination of crowdsourcing information that interests the local community, along with the fact that they all have access to this repository, allows such projects to contribute to goals of sustainability: Information on clean sources of water ties to SDG 6, monitoring animal conflicts ties with SDG 15, and so on. “In that sense, it [the project] could really promote sustainability through practice and through providing tools.” A very interesting outcome of the citizen monitoring of the conflicts between the animals of the reserve and their herd animals, is that it could also assist in safeguarding the security of their livelihood by providing evidence in support of claims for compensation; “this is a big issue, the local government is hesitant with paying compensation in these types of conflicts.”

Shaky Sustainability

It sounds ideal: Science being done in service of the public, while including them in all stages of the design, aligning with their priorities, and all that while also contributing to, and gathering data in service of, global goals of sustainability. But, of course, it is not that simple.

Citizen science projects are often touted as cost-effective sources of data. This notion is challenged in a study, co-authored by Dr. Gharesifard and based on the Ground Truth 2.0 project, where the authors conclude that “the cost of obtaining citizen science data is not as low as frequently stated in literature.” He adds that “you spend a lot of money and time on meeting each other, creating things together, thinking together, but after that when you have this and everybody trusts it and they start using it, then the cost goes down.”

But even these comparatively small maintenance costs can often be prohibitive for the sustainability of the project, with a common issue amongst CS initiatives being that they do not survive in the long term. Dr. Gharesifard expands on this topic by explaining that the issue is not the size of the funding per se, but rather its longevity: “A problem that we have faced a lot in citizen science projects is that there is a source of money, and with this source you can do a lot of things, but after the funding is finished the researcher is on his or her own way […] I think it’s a big flaw in the way that we fund this type of projects”.

He further adds that “you can do capacity building, you can try to train people also on doing these things, but still, this needs to be built into the design of the project, and beyond that, it would need to be built into the current ways of funding projects.”

A project may start with a lump sum large enough for its operation, but as soon as the funding is over, the financial responsibility is suddenly shifted onto the local stakeholders, making it difficult to keep up. A scheme whereby a portion of the funding is reserved for long-term maintenance and running of the project may be what is needed to ensure its sustainability; allowing projects to mature, so that they can eventually be run exclusively on local funds.

Context Matters

But overall, the most important aspect, which is at the heart of citizen science, is inclusion; hearing the voices of those whose lives are intimately intertwined with the issues at hand, and doing so in a genuine way. It is easy for a group of researchers – or an affluent country leading a CS project, for that matter – to approach with the assumption that they are leading. The importance of keeping this potential imbalance in mind is further underscored by Dr. Gharesifard when he says that “power dynamics [are] very important. Quite often we assume that when you bring people to the table they have the same type of authority or power and that’s almost never the case.”

He further elaborates on this in his 2019 paper, also drawing from the Ground Truth 2.0 project, about how ‘Context Matters’. As he later remarked, “There are countless ways of engaging citizens in citizen science projects […] it needs to match the budget, it needs to match the aim, it needs to match the time-frame, the available resources, and other realities on the ground. The context.”

After all, isn’t context what it ultimately is about? Local citizens getting involved, setting the agenda, having a voice, lest the context is ignored. In the words of Dr. Gharesifard, “Context matters; it really is an issue of thinking carefully on what makes sense and what is possible”, and getting the context right is the first step to defining a problem and coming up with a realistic response; a sustainable solution.

Christos Vlasakidis is a M.Sc. student, Science Education and Communication, University of Groningen, Netherlands, and DDRN university intern.

Vulnerable Infants: The Burden of Being Born Too Small, Too Soon

Christos Vlasakidis — Mon, 11 Sep 2023 11:48:23 +0000

In a pristine, organised room a repeating beeping sound is suddenly masked by high-pitched crying, followed by sighs of relief as a baby is born. Right on time and at a healthy weight, the baby has already avoided a whole range of risk factors that would stand in the way of a healthy development. But the same cannot be said for about one in every four of their fellow newborns, who are born too small or too early; a “Small Vulnerable Newborn”.

This new term was introduced in a series of papers published in the Lancet by an international collaboration of researchers spanning countries from Finland and the USA to Kenya and South Africa. The research sketches the scale of the issue, particularly in Low and Middle-Income Countries (LMICs), bringing together findings on the context, causes, and consequences of being born too small or too early, and grouping these cases under the umbrella term “Small Vulnerable Newborns” (SVNs). In doing so, they provide “a better framework on how to address this group unitedly; one giant group coming from the same pile of risks and having some of the same associations later in life”, explains Dr. Nanna Maaløe, assistant professor at the University of Copenhagen, whose research focuses on global health during pregnancy and childbirth.

“We know much of this already”, she continues. “We know we have a major stillbirth issue globally. We know we have a major preterm birth issue. We know that we have a major issue with intrauterine growth restriction. And we already know that stillbirths and neonatal deaths – both groups are associated with what you can call an ‘epidemic of grief’”.

The Small Vulnerable Newborns Series

Over half of the newborn deaths in 2020, as well as the majority of the 1.9 million stillbirths each year, are associated with being SVN. But the issues extend beyond birth: “If you are born vulnerable and you survive your newborn period, then you are at increased risk of morbidity and too early mortality throughout life”, adds Nanna.

But what causes the birth of an SVN? The causes and complications that lead to being born prematurely may differ from those leading to being born too small, but undernourishment, psychological stress, and environmental exposure are examples of factors affecting both. A mother who is constantly under stress, or does not have access to proper nutrition, is more likely to give birth to a newborn that is vulnerable. Thankfully, at each stage of the pregnancy where things may go astray, there are interventions that can reduce that risk. Protection against infections, supporting better nutrition, and healthier living conditions can be positive changes to the life of an at-risk mother, making it more likely that she will give birth to a healthy baby. “These risks for the babies are closely related to the woman’s risks during pregnancy and childbirth; working on these risks is a way to improve the health of both the woman and her baby”, adds Dr. Maaløe, emphasising the dimension of women’s health, a facet of the issue that is arguably underexplored in the series.

The researchers list proven interventions that can help with the prevention of SVN births, including nutrient supplements, low-dose aspirin, and psychosocial interventions for smokers. Some of the interventions, such as insecticide-treated bednets are better suited for specific subgroups of at-risk mothers, while others, like screening and treatment for syphilis, work positively for all cases. In addition to these, potential interventions such as omega-3 supplements appear promising but are in need of further research.

Carrying the Burden

While being born an SVN is a danger globally, not all parts of the world suffer equally. “The burden of SVN and stillbirth is highest in South Asia, Sub-Saharan Africa, and in humanitarian contexts”, state the authors, “hence activities need to focus especially on these settings”.

Global commitments have been made to tackle the issue, yet progress has been stagnant in the past decade. The authors trace the lack of progress to “inadequate response” and close the series with a call for all countries to reduce the number of SVNs and stillbirths through action based on three pillars: problem recognition, intervention implementation, and increased accountability.

Particularly for the first and last pillars they place importance on routine health data, which has been inconsistent or lacking, making it harder to understand the issue. This is part of why the series introduces the new term of SVNs, grouping three types of vulnerable babies. Their aim is to streamline and refine data collection, the central role of which is underlined by Dr. Maaløe’s assertion that “what is measured, will most likely change, and what we see with stillbirth, preterm birth, and low birthweight, is that overall, it is largely underestimated, undervalued in statistics and in global progress reports”.

The death of a newborn is in itself a tragedy. However, SVNs are not a problem confined to the morbidity of mortality. It is indicative of, and contributes to, a wider issue in the plagued communities which run the risk of being locked in a vicious cycle where (surviving) SVNs live vulnerable lives, leading to a ‘vulnerable society’ perpetuating the conditions that make future mothers vulnerable. And so the cycle continues, making this an issue of sustainable development disproportionately affecting less affluent countries.

This sentiment is echoed by Nanna Maaløe who, in her experience working with some of the most congested hospitals in countries like Tanzania, has seen this discrepancy. Referring to the Lancet series, she states: “At the current speed, it will take 160 years before a woman in Sub-Saharan Africa has the same chance of giving birth to a live baby as a woman in Denmark has now”. She poignantly adds, “The progress is so slow, and we know what to do about this”.

Bridging the Gap

We can no longer evade the question that is looming since Dr. Maaløe’s “we know much of this already”; what are we doing about it? The intention appears to be there: as the authors of the series state, “Embedded in the UN’s Sustainable Development Goals is a roadmap to break the cycle of poverty and disadvantage perpetuated by poor health in childhood and adolescence, giving rise to vulnerable pregnancy and infancy”. And yet, the results are falling short of expectations.

The World Health Organization (WHO) provides clinical guidelines for contacts throughout the period of pregnancy. However, both the Lancet series and Nanna agree that often in LMICs, the guidelines do not lead to the predicted outcomes; “There persists such a crucial gap between clinical guidelines from, for example, the WHO, and reality”, Nanna comments, further reinforcing the importance of a focus on implementation, the second pillar in the series’ call-to-action. Pointing at the series, she highlights the main point: “What is very much the message here, is the ‘evidence-practice gap’; how come we know, but we don’t do”.

Both appear to promote the need for a ‘horizontal approach’, with a broader focus on the health system and the context within which it operates; a context which in many LMICs is characterised by inadequate infrastructure, over-congested facilities and poverty, all within rapidly expanding urban settings. A case exemplifying these structural factors is Dar es Salaam, Tanzania’s largest city, the world’s second fastest growing metropole, and one of the foci of Nanna’s work within the PartoMa Project for creating guidelines that account for the realities of the setting and of those who work within it.

She paints a powerful picture, describing real situations from overwhelmed clinics, with up to six women in labour at the same time sharing just one inexperienced and overworked attendant, whose only guidelines “show them an ideal reality that they can never live up to in the current clinical setting”. “One of the root causes of these major issues of evidence-practice gaps are dysfunctional, sick health systems”, Nanna concludes. In a manner analogous to the health of the mother determining the health of the baby, such challenges are ‘birthed’ from the afflictions of the health sector; an unhealthy baby from an unhealthy mother.

It is necessary then for any guidelines to be contextualised, taking into consideration the conditions under which the healthcare providers work, or as Dr. Maaløe puts it: “That gap shouldn’t be there; we should understand that we develop clinical guidelines for the front line, with the front line. We are serving them”.

Perhaps then the solution lies in strengthening the respective health systems with due consideration for specific circumstances, rather than in detached research approaches. “In Tanzania, many governmental people say that they are so tired of ‘pilotism’, pilot studies, at a time when we have so many things that have never been implemented”, recounts Nanna, who has been focusing on co-creation of clinical guidelines; collaborating with frontline healthcare providers and local women, relying on their tacit knowledge and experiences of the issues faced in these settings to develop guidelines “localised to their reality”. Whether that entails adapting the current WHO guidelines to be applicable to specific circumstances or adding ones that address the issues faced in this context, the objective is a pragmatic one: “As long as some women are sharing one birth attendant with five other women, there must be guidance for that overwhelmed birth attendant to prioritise between them”. A cooperative approach, which appears both the most effective and most equitable avenue for accelerating progress in this field.

Thinking Global

The new Lancet series, as well as Dr. Nanna Maaløe, operate within a similar paradigm, one of “thinking global”, rejecting the demarcation of this type of research as ‘low resource health system research’. Rather, viewing these challenges and those working on them as they are: global health challenges tackled by global health providers. A horizontal and dialogue oriented approach, an outlook on research where one can say that “in a way, this is ‘research activism’; this is making research matter”, as Nanna said of the series. Where research is mobilised in service to those at the front line of healthcare, arming them so that they can, in turn, serve the women who need them the most.

In examining the issue of Small Vulnerable Newborns, we find it tethered, as if by an umbilical cord, to a larger systemic issue we are called upon to collaboratively resolve. Hence in addressing the issue of babies born too small or too early, we are confronted with an issue neither too small, nor too early to prioritise.

Christos Vlasakidis is a M.Sc. student, Science Education and Communication, University of Groningen, Netherlands, and DDRN university intern.