When two British midwives travelled to Peru earlier this year, they found Paddington Bear near the beach in the Miraflores district of Lima, but they also found what they were looking for: citizen science!
The overarching concept of citizen science encompasses a wide range of smaller concepts from butterfly counts to social policy campaigns driven forward by community activism. It is largely agreed that the origins of citizen science date back millennia to ancient China when migratory locusts destroyed harvests and, in response, residents helped track the outbreak (Irwin, 2018). Residents of the area have continued to do so since then. Similarly, during the COVID-19 pandemic, the REACT project (Real-time Assessment of Community Transmission) at Imperial College London built a real-time assessment platform to track the community transmission of the corona virus. The project relied on home-testing kits and involved over three million United Kingdom citizens. From locusts to COVID-19, the core concept is the same: involvement of people. Building upon this core concept, further parallels can be easily drawn. The sisterhood of the Isala project has begun to pop up around the world and in case of the Laura project in Peru, the involvement is perfectly natural and perfectly pitched.
Background
Hot on the heels of having attended the Isala symposium in Antwerp, my research midwife colleague and I were primed and prepared to view the Peruvian relative of Isala, named Laura. Thanks to the support of THET (Tropical Health and Education Trust), we have been working hard on a global twinning project with our colleagues in Uganda, including Dr. John Paul Bagala, since 2019. Since then, we’ve endeavoured to build and bridge research capacity in maternal health in both settings with particular interest in the involvement of midwives. We have built a midwifery workshop programme and now we are looking to join the Isala sisterhood and launch a similar, but bespoke, citizen science project in Uganda, named Florence. The mutual interest and introduction to Isala by Professor David MacIntyre (reproductive systems medicine) came at the right time.
Involvement
Arriving to the hospitality of the fantastic Laura team in Lima, it was immediately clear from the study core how the project has worked so well. Within minutes we were in a van off to visit the Laura project in action within the enclave of Independencia. This was a valuable peephole into the project that we were grateful to gain. Dr. Theresa Ochoa’s team, based at Instituto de Medicina Tropical Alexander von Humboldt – Universidad Peruana Cayetano Heredia, includes team members that are clearly all committed and collectively essential to the project, but when we picked up two community health workers, it was clear that it was they who truly held the project’s ‘heart’ in their capable hands.
Independencia district, Lima
Understanding people and place
The district of Independencia is a hillside community with a high level of social deprivation and fragile infrastructure. Arguably, it is a marginalised community challenged with high levels of disease and crime. The community health workers have lived there all their lives and know the people and the place like the back of their hand. Asking about how the vaginal swab collections happen, Bertha (one of the health workers) explained to us that it was easy if you knew when to go. Typically, she does home visits in the evening to collect swabs around 8 pm when participating women are likely to be home from work. To her, this is no trouble at all as she lives around the corner. She knows this because she knows the women. It was clear that the Laura project wraps around the realities of women’s lives and not the other way around.
Part of a movement not just a moment
Exploring a little more I asked why she thought the women were interested to take part in the project at all. She thought the younger women found it interesting, maybe made them feel special, something to be part of. The Isala project has built a clear identity with fantastic tools to promote and provoke communication and conversation and has not missed a trick with ‘merch’! The Laura ‘club’, so to speak, is cool. Who wouldn’t want to join?
Not everyone embraces the invitation for involvement, though. Both health workers observed that many of the ‘older’ women were not as open to joining the Laura movement. Ultimately, it was thought that some of whom simply didn’t want to invest their personal time in research participation. One probably doesn’t have to work in clinical research to already know that practicality can always trump the other parts of the package, no matter what kind of bag it comes in.
Trust
Deeper than the external details in a citizen science project lies trust. Bertha had explained to me quite simply “…They trust me…”. Indeed, trust can not only open the door to a project like Laura, but it can keep the door open. In such a space, conversations on topics around vaginal health and those that can typically be perceived as taboo, start to happen. Trust is big. The particular forms and shapes of trust look different in different places with different histories. Suffice to say, its’ absence can drive science very far from the citizen.
Days later when we visited the second project site of Laura in Iquitos, led by Professor Viviana Pinedo at Universidad Nacional de la Amazonía Peruana in the Peruvian Amazon, we were surprised to find that the field worker of the project was a young medical student in his final year, named Marco. Asking Marco how the Laura project and himself were received by women he spoke to, he said that it was no problem; “…They trust me…”. Unlike the healthcare workers in Independencia, he didn’t live in the same community for 38 years like Bertha, so I wondered how he was accepted in his place talking to women about the vaginal microbiome. He told me he thought acceptance was because he listened to the women. The complexity of the intersection of trust, science, and research are a subject in itself, but I was satisfied to hear that trust can grow in the quiet spaces of hearing someone and not speaking at all.
Health knowledge is power
The COVID-19 pandemic has given a global opportunity to examine the public’s relationship with information on their health and healthcare modalities (Lancet, 2020). From some public health perspectives, it can erroneously get assumed that the missing ingredient to health behaviour change is information, but of course health behaviour and ‘buy in’ to science, health research, and health systems (or not), is far more complicated. Socio-cultural issues and tensions around trust and power play a far larger role. It has been suggested that with the fear and uncertainty that follows a major health-care crisis, individuals seek information and reassurance in the places most familiar to them (Lancet 2020). However, isn’t this true, all the time? I get the feeling that the people of the Laura project get this, without thinking.
Knowledge-sharing and communication
A central precept of the Isala citizen science project and her sisters is the sharing and valuing of knowledge with people. The knowledge-sharing in the Isala citizen science model is like research dissemination sped up. The Isala website alone is a treasure trove of sharing and information. In the central square of Brussels, one might find Dr. Sarah Ahannach literally on a soap box sharing science, but that the same radical act of sharing of authoritarian knowledge could equally look like a careful community conversation not typically held. When contemplating concepts of citizen science, a colleague of mine once questioned; “…Isn’t citizen science just research done well?”. Citizen science, beyond the butterflies, birds and microbiota is indeed along a continuum of ‘good’.
The future is Florence
Today in a UK newspaper, scientists working to advance knowledge about mosquito repellent and the microbiome of the skin, hope to harness the potential of citizen science to learn about the mosquito. Our trip to Peru confirmed to me that citizen science is about much more than counting and classification. It is about the community that is involved and created in the process.
So, for two British midwives in Peru, we come away from our experience with the Laura project team in Lima and Iquitos full of insight, full of ideas, and full of enthusiasm for the possibility of the celebration of more women in science in another place with another name. We look forward to finding our place along the continuum of good with women in Uganda.
Special thanks to Dr. Sandra Condori, who is co-investigator and coordinator of the Laura project. She is a molecular biologist with Peruvian roots, currently working as postdoctoral researcher in the Lab of Applied Microbiology and Biotechnology (LAMB) at the University of Antwerp, led by Prof. Sarah Lebeer. We’re grateful to her for connecting us with the Laura project team in Peru and making our visit possible!
Written by Alison Gabrielle Perry, Lead Research Midwife/ manager, Women’s Health Research Centre, Imperial College London.
References:
Blog editor (2020) Editorial: Knowledge is (still) power. EClinical Medicine online (part of The Lancet Discovery Science). Available from: https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(20)30109-7/fulltext [Accessed on: 05.05.2023].
Blog editor (2021) REACT- The COVID-19 study helping to piece together the bigger picture. Available from: https://ukhsa.blog.gov.uk/2021/12/02/react-the-covid-19-study-helping-piece-together-the-bigger-picture/) [Accessed on 05.05.23].
Irwin, Aisling (2018) Citizen Science Comes of Age: Efforts to engage the public in research are now bigger and more diverse than ever. But how much room is there to grow? Nature. Volume 562, 25 October 2018. pp 480-482.
Lytton, C. (2023) Are you a mosquito magnet? Help may be at hand. The Observer Medical Research online Available from: https://www.theguardian.com/science/2023/may/07/mosquitoes-repellant-bite-summer-science-medical-research [Accessed on 05.05.23].