The Isala Sisterhood

Abstract

Women’s health is receiving increased attention, but science is still not meeting society’s needs when it comes to vaginal health. In the last 40 years, no major breakthroughs have been made to manage bladder and vaginal infections. One way to set a societally relevant research agenda is actively involving citizens in scientific dialogues. We founded Isala as a citizen-science project to advance research, diagnostics, and therapeutics for the vaginal microbiome. The Isala Sisterhood has expanded internationally into 20 countries, increasing representation in microbiome research. In a co-creative way, more than 6,000 women have provided intimate samples and data, proposed research objectives, and disseminated and interpreted results. The number of participating women is expanding across the world. Jointly, we are breaking taboos in women’s health, increasing scientific literacy, and providing new insights into the vaginal microbial ecosystem. Together, we are building the largest citizen-science project in the world on vaginal health.

Introduction

Our principal investigator, Prof. Sarah Lebeer, manages a large and multidisciplinary team including microbiologists, biomedical scientists (Sarah, Ahannach, Sandra Condori and Maria Pinedo Bardales), bioinformaticians (Stijn Wittouck, Monica Tcilla, and Tim Van Rillaer), biostatisticians (Thies Gehrmann and Kato Michiels), bioscience engineers (Jelle Dillen, Leonore Vander Donck, Isabel Erreygers, Inas Rahou, Caroline Dricot, Maline Victor, and Camille Allonsius), and lab technicians (Nele Van de Vliet, Reine Audenaert, and Sam Bakelants) from the University of Antwerp. We collaborate with sociologists (Caroline Masquillier and Nina Van Eekert), communication experts (Studio Maria, Charlotte De Backer, and Karolien Poels), policy advisors (the Sensoa Centre for Sexual Health and the Provincial Institute for Hygiene), gynaecologists (Gilbert Donders’ team), general practitioners (Veronique Verhoeven’s team), non-profit organizations, and enthusiastic citizens. We are currently active in 20 countries, each of which has a passionate research team that takes the lead for their Isala Sisterhood project (named after their own role model). Together, we closely monitor societal impact, policy development, valorization, and inclusivity. We organize focus groups and in-depth interviews to include diverse and vulnerable groups such as Moroccan and Turkish women, women who have had abortions, and women from lower socio-economic backgrounds.

Who should benefit?

Women’s health is receiving increased attention; however, science is still not filling society’s needs when it comes to vaginal health, despite it affecting 49.7% of the global population. In the last 40 years, no major breakthroughs have been made on managing bladder and vaginal infections, such as bacterial vaginosis (BV) which affects around 30% of women globally. The annual global economic burden of treating symptomatic BV in the US alone is estimated at US$4.8 billion, and this figure is nearly tripled when including the costs of associated preterm births, HIV cases, and fertility issues. About 70% of women worldwide suffer from vulvovaginal candidiasis at least once in their life. Episodes of this fungal infection can be accompanied by a burning sensation, pain, and reduced mental wellbeing. Due to increasing rates of antimicrobial resistance, the world is in dire need of alternative treatments, such as live biotherapeutics and better diagnostics. Diagnosis of endometriosis, which affects 10% of women, takes approximately 10 years; therapeutics and diagnostics are lacking for this condition, and those that do exist are often not translatable to women living in low- and middle-income countries (LMICs) as most studies have been performed in the West. Research has shown that the vaginal microbiome is significantly associated with geographic regions. The Isala project and sisterhood were established to bridge the global health-equity gap for vaginal health. Named after the first female doctor in Belgium, Isala Van Diest, who was an inspiring activist, feminist, and role model, the Isala Sisterhood consists of 20 ongoing and starting citizen-science projects in Belgium, Peru, Switzerland, Cameroon, Morocco, Uganda, Nigeria, France, Spain, the UK, the US, Canada, Colombia, Argentina, Estonia, Germany, India, Italy, Madagascar, South Africa, and Venezuela. We aim to inspire research on women’s health and microbiome worldwide while simultaneously helping smaller labs in remote locations with capacity building. The sisterhood researchers stand close to their own communities while actively participating in stakeholder engagement and outreach. The umbrella Isala project is creating an ecosystem where research teams in various countries share best practices (for example, in terms of wet lab and in silico research, communication tools, and logistics), facilitate international mobility of young researchers, and support each other in closing the gender data gap.

Engagement

The Isala project was launched in Belgium in March 2020, with no budget for communication and recruitment. It mostly relied on social media, spontaneous press coverage, and volunteers. While aiming to recruit 200 women, within 10 days more than 6,000 had registered. Citizen scientists (CSs) are central to the project’s research and social goals, so we went the extra mile to be able to offer them all the opportunity to participate. We collaborated with sociologists to establish demographic profiles and explore the best options to engage a more diverse and inclusive community in subsequent phases. To ensure inclusive recruitment in follow-up projects, we performed focus talks and in-depth interviews with women from Moroccan and Turkish backgrounds (as these are the largest ethnic groups in Belgium), as well as women living below the poverty line, and we are now implementing the lessons learnt. Additional lessons have been picked up from our feedback survey, which was filled out by more than 2,000 citizens. Each Isala CS is empowered to act as an ambassador, armed with the necessary communication tools and research updates, and encouraged to spread news and help break taboos concerning this intimate topic. We have a vibrant online community and actively partake in international offline outreach activities. An exquisite example of the Isala Sisterhood in action occurred when members of the Ugandan Florence sister project travelled to meet members of the Peruvian Laura sister project in the remote Amazon Forest to exchange citizen-science practices with respect to local cultures. The Isala Sisterhood invests in community engagement and building to promote co-creation, build bridges between citizens and scientists, and broaden perspectives. Via these platforms, we daily engage with CSs and enthusiasts. We create a safe, kind place for people to share their stories, help each other, and co-create interesting research ideas. Overall, our science communications aim to reach 5,000‒10,000 people each month.

Research

The Isala project is unique in the microbiome field as it uses a citizen-science strategy to bridge women’s health equity gaps and align scientific research with societal needs. This approach offers researchers the opportunity to facilitate large-scale sampling and data acquisition, while engaging citizens in a co-creative approach that solicits their input. We strive for a holistic, community-centred approach with significant societal relevance.

The Isala Sisterhood addresses both scientific and societal research questions. Our goals are to map the vaginal microbiome and study its influencing factors to build better diagnostics and therapeutics. Participants complete a survey of demographic, lifestyle, and environmental factors via Qualtrics, and provide self-collected vaginal swabs. Informed by citizens’ involvement in the study design, research questions regarding menstrual hygiene, underwear, and diet are included; these had not previously been explored in the literature and are a great example of co-creation. Our first results were published in Nature Microbiology, after we had communicated them to the CSs in June 2021. As soon as all data were available, each participant received their personal vaginal microbiome. The initial overarching results were also communicated with the broader public. Our societal goals are to break the taboos surrounding vaginal health, create awareness of intimate research, and empower women to take their health into their own hands. We aim to increase scientific literacy by inviting women to participate in scientific processes in microbiology and biotechnology research, and by helping them to critically interpret research results and information on reproductive health. Simultaneously, we highlight the role of women in science, technology, engineering, and mathematics (STEM), and actively work with policy makers to deconstruct structural barriers and promote value creation through incentives for behavioural changes towards science and environmental issues. We achieve this by transparent and recurrent communication, and continuous community-outreach activities (giving research a ‘face’ with many meet-and-greets both online and offline). These aspects are reflected in each Isala Sisterhood project, and tailored to local needs, culture, and facilities (such as the lack of electricity in rural areas of Cameroon and the Amazon in Peru). Research teams address logistical aspects to organize activities with a sustainable impact on local societies, providing community members a safe space to share their stories.