When nothing comes out as planned (or doing some participatory research in the middle of a pandemic)…

In 2020 our team was very excited about planning the focus groups, the workshops, and the meetings for our STOPSTIGMA Project, a participatory research to address stigma and discrimination among users in the health services of Ecuador and Bolivia. We had been working for few months on the design, protocol, tools that a research project needs; including the participation of the Ecuadorian team in a workshop planned to be held in Cochabamba.

However, SARS-COV2 had other plans for us. Daniel, our mentor from CEADES in Bolivia, called one day and let us know that Bolivian borders were closed, few days later Ecuador was in lockdown. Suddenly, our research plans had a turn on -not to mention that our lives, as for millions of people around the world- were upside down. How we will continue? Was the project still viable? Will we survive? Were some of the questions of the team.

As the days passed by we realized that we must continue the project, however, most of the timeline and methodology had to change. From the surveys to the focus group, all were considered to be face-to-face activities, and now almost everything has to swift to remote.

Living in countries where limited connectivity is a daily critical point, we had to figure out how to assure stakeholders’ participation that effectively would respond to the social demand collected in the city of Cochabamba in 2019, from PL WHA (people living with HIV/AIDS) and their family members (As part of the InSPIRES project executed by CEADES with H2020 funding from the EU).

During a workshop, held with users and civil organizations; one of the demands collected corresponded to the measurement and fight against stigma and discrimination suffered by PL WHA within the health facilities in Cochabamba. On the other hand, in Ecuador the conditions and problems are similar, so in the previous contact with representatives of the PL WHA of Quito (personal interview), the same demand was identified.

In 2019, the InSPIRES project launched a call for research with community participation, to which SIEDIES (Ecuador) and the UMSS School of Nursing (Bolivia) prepared a proposal that responds to the social demand collected by CEADES in the InSPIRES project, obtaining the financing for the execution of the participatory research.

The main objective is to reduce the stigma and discrimination attitudes, mainly from the nursing staff, against people living with HIV who are demanding health services in the public health system.

To guarantee the response to such a sensitive subject, the team reframe the research protocol, and along with the InSPIRES team (based in Europe), we decided to do most of the tasks online. The survey was transformed into an online form and most of the workshops were planned to be via zoom.

How to assure that people with limited internet access would either respond to the form and participate in the workshops? Buying data for connection was the answer, we bought “Megas” for their phones in the two countries, and with that, some amazing things happened.

This change allowed more people to participate and even we have people from other cities than Quito (the capital of Ecuador, where the Ecuadorian research team is based) and even, we were allowed to have activities with the participation of people (civil society, nurses, nurse students, and research team) from both countries! (We were able to hold two face to face workshops with doctors and nurses).

Surprisingly, during the Science Shop project, around 350 people from Bolivia and Ecuador were connected. We also had to change the Zoom account since the one we were using was not enough for that amount of participants.

During the whole process, as a research team, we had the incredible opportunity of learning from and with all the participants. Since we all come from a health profession (doctors and nurses) could do a self-reflection of our own experiences during our training and also during our professional life.

In both countries, there is a general perception that even though nowadays is less discrimination and stigma against PL WHA, this is still a problem. Especially in those health services that are not used to these patients (ie. dentist, physical therapy, other specialties) taking into account that in Ecuador as in Bolivia, health facilities for PL WHA are differentiated for other services. (Have also their own space, separated from other health care establishments).

They agreed that information among health professionals is still needed, especially regarding the ways of transmission of HIV. But the factor they recognize as more important was the early contact of students with the diversity: gays, trans communities; not just in the health centers but as part of the relationship between the Universities and the society.

They recognize that moral and religious values and misconceptions have a paramount incidence in the stigma even inside their own communities. (We could see this factor in the results of the online surveys).

All of this is deepen with the lack of resources (financial, human, time) that we are facing in Latin American health systems, aggravated even more during the pandemic; the lack of PPE could be a good example of this. A very important asset was the participation of the Dean of UMSS nursing School throughout the whole process, and her compromise to propose changes into the career’s curricula.

Last but not least, one of the participants was emphatic in telling us: “we do not want to be included, because we are already part of the society; we want to have the rights that any citizen has and have the same respect as human beings”.

Undoubtedly, this was a unique experience for all of us, and such a challenge. Probably is time to rethink research in the ways we have been doing. This could be an opportunity to enhance participation, as long as we can guarantee good internet connections, along with countries and different realities and contexts.

Who we are and what was the main object of this project?

Sapientia Hungarian University of Transylvania is a relatively young (established in 2001) independent Hungarian University in Romania. It is functioning in four different towns, including Miercurea Ciuc, which is the county seat of Harghita. Regarding the activities in Miercurea Ciuc, in addition to education and scientific research activities, in recent years the university is actively involved in different research programs directly connected to regional or local demands. Therefore, fruitful professional cooperation networks with domestic and international institutions were established and Responsible Research and Innovation (RRI) was promoted. The university has been involved in challenging projects such as SPARKS (an awareness-raising project to show Europeans that they can get involved in science and that various stakeholders share the responsibility for scientific research and innovation) in order to promote RRI.

The university-community partnership was developed and strengthened in the last ten years by science communication and participatory activities as: science shops (collecting research questions from the region), science competitions (Labworm, CSI Sapientia), open lab door actions (e.g. Painting with microbes), third age academy (Silver Academy) and other science communication actions (Beyond the Lab exhibition [Sparks project], We are all witnesses – Exhibition on climate justice [Change the Power – (Em) Power to Change project], Coffee house scientific presentations, Sapiophile vlog, Podcast). Several research topics aroused from a real need of the local community, mainly related to the quality of environment.

According to these needs, the Sapientia University’s main objective was to organize participatory events for and with stakeholders to discuss different issues related to environment pollution and human health in order to generate substantial social value for the local community.

Local stakeholders and actors involved were represented by Harghita County Hospital, the County Public Health Directorate, the County Environmental Protection Agency, Harghita County Council, education institutions and NGOs.

Meeting the project stakeholder’s needs and engagement

According to our current experience in the region it is obvious that decision-makers (Harghita County Council) and professional institutions (Harghita County Hospital, County Public Health Directorate, County Environmental Agency) have gathered a significant amount of pollution and health-related data, analysed and interpreted only to some extent and only intra-institutionally. The project thus responded to the need of these institutions, but also to other groups (health-and environment related NGOs, NGOs dealing with vulnerable groups, public education institutions).

Methods used for achieving the objectives

The principal used methods have been: Participatory actions (reverse science café, thematic workshops, science café); pilot research project (sampling [fieldwork], sample analysis [labwork], statistical data analysis); and dissemination and research communication (press conferences, online media communication).

It has already been demonstrated that Participatory Action Research (PAR) offers helpful tools in order to address and identify community issues and strengths and thus involve the community members into action. During participatory actions stakeholders were identified based on the theme of the thematic workshop that was going to be organized. The workshop proposals were well received by the stakeholders and four online meetings were arranged through the Google Meet platform, due to the COVID19 pandemic.

Throughout participatory actions and events (1 Reverse science café, 3 Thematic workshops and 1 Science café) organized in the framework of hAIRgita, the project team ensured the activities being developed were gender equality and human rights-responsive. The activities focused on being conducted in an inclusive, participatory, reflective, respectful and transparent manner. Gender balance was observed through invited participants (generally speaking, 50% of the participants of the Reverse science café, Thematic workshop and Science café events were women), informed consent was used in relation to photos being taken during the meetings, and responsible personal and scientific data management was ensured during all project activities.

During the reverse Science café the invited participants got a picture about what is the goal of this project, what kind of questions should be answered and analyzed with which methods and according to our plan what will be the expected impact. Finally, there was an excellent brainstorming regarding the multidisciplinary aspects of the present project, why was essential to better understand the relationship between air pollution and its effect on public health. The meeting also encouraged the participation of the young generation, therefore PhD students were actively involved during the thematic workshop.

As a result of this session, the representative of Harghita County Council proposed the project scientific outputs to be integrated in the Country’s Air Pollution Strategy. Ideas arose to improve communication and dissemination activities (by the partner institution’s social platforms or even by social networks of elected officials – Facebook and Instagram pages).

 

The second thematic workshop on air microbiome and pollution was organized also as online event. During this workshop the most significant research achievements in precipitation and air microbiology were presented and possible research perspectives in this field were outlined and discussed with the participants. According to the outcomes, in order to decipher and carry out microbial characterization, it is expected the use of the metagenomic approach.

During the meeting the participants were encouraged to participate in a quiz “competition”, using Mentimeter, where the questions were manly related to the theme of the workshop, including the microbiology of air and precipitation and on the other hand to the possible public health aspects.

 

During the third thematic workshop on complex interactions and public health aspects of air pollution, the effects of major air pollutants —including particulate matters as well, and weather on respiratory and cardiovascular diseases in the Ciuc basin— were presented and discussed in detail with the participants.

Since the workshop had a medical aspect, the second part of the meeting was held by a specialist from the Public Health Directorate of Harghita County. As a result of this session, the participants agreed that we are far from being able to fully understand the processes taking place between air pollution and human health, thus the real quantifiable impacts are yet to be discovered. 

 

 

At the end of the thematic workshop we were interested to find out what do the participants think about the project, what are the lessons of the project so far. According to the results the participants believe that the project and the project objectives are diversified with multidisciplinary characteristics, are interesting and based on cooperation between different social actors.

As stated in the event invitations, participants were encouraged to synthesize and contribute with ideas to the project activities, in the form of a Q&A session, with the following topics: what are the main research questions/topics of interest/open science approaches from their institutions related to air quality-health correlations?; how could their institutions contribute (with data, results of past projects or innovative communication methodologies) to the scientific or science dissemination and communication activities related to this topic? and what approaches/methodologies do their organizations propose to improve the societal visibility of scientific data and results?

A press release on the launch of the project and the first events organized as well as a final press release with the project outcomes were sent to local and regional press bodies. The project was also briefly presented in the EPP-CoR Publication of the European Week of Regions and Cities.

Regarding the project’s impact on public policy, dissemination events and further consultations resulted in a direct collaboration of the InSPIRES project team and Harghita County Council to participate in the elaboration of Harghita County Council Air Pollution Strategy, Members of the project team were invited to participate in a workgroup created to design and elaborate this strategic document.

Through the project’s events, the involvement of different stakeholders expressed their opinion and contributed with ideas and offered to integrate their data the research and innovation activities proposed by the project.  Among these stakeholders we can mention public institutions such as Harghita County Council, the Harghita County Environmental Portection Agency, Public Health Directorate of Harghita County NGOs such as Pogány-havas Associtation, and academics from Sapientia University and the Institute for Research and Development for Hunting and Mountain Resources.

One of the main outcomes of the project resulted in policy recommendations, where we present the types of measures recommended to facilitate the maintenance of air quality in Harghita County.

How did the InCRECA Project arise?

Kadıköy, like many cities around the world, faces the risk of several disasters such as earthquakes, floods and heat waves due to its geographical location, natural assets and intense urbanization. Therefore, citizens who are aware of these risks want to take part in the all stages of Disaster Management Cycle and Adaptation of Climate Change.

A movement could sometimes start from a connection with local governments, departments or authorization bodies. Citizens who aim to find solutions to environmental and climate change raise their voices collectively within a naturally occurring organization or network. Social demand usually comes from citizens and these networks or initiatives. People who live in Kadıköy are mostly aware of the destructive effects of climate change and disasters and communicate with the municipality about urban problems by using different channels.

Consequently, “InCRECA: Increasing Social Resilience in the Climate Adaptation Process” project proposed a resilient structure guided and supported by the local government. The structure — developed with the support of experts and local science— aims to ensure participation of volunteers sensitive to the subject at the local level, increasing citizen awareness.

At the beginning, InCRECA was planned to be carried out in a small pilot area; but, because of the obligatory conditions of the pandemic in the following time, the project was spread to whole Kadıköy.  Thereby, the impact area of the project has expanded, not to mention the number of participants.

What was the project aim?

InCRECA established interaction between citizens, citizen-municipality and citizen-scientists through warning and feedback mechanisms. Moreover, it gave an opportunity to stakeholders to work in collaboration with different actors of the community. InCRECA has aimed to reach the following goals:

• To create a resilient, voluntary, flexible structure directed and supported by the local government and to ensure participation at the local level.
• To reduce the negative effects of climate change on public health and to increase social resilience.
• To establish the Kadıköy Municipality Environmental Monitoring System (KEMS) and to activate it with the participation of citizens.
• To raise awareness about the adaptation of citizens to climate change with the support of experts.
• To bring volunteers together with science and technology through the support of experts and academics.
• To establish a system to alert disadvantaged populations in emergency situations such as air pollution and heat waves.

How did it progress?

InCRECA was carried out in four phases: (1) pilot area project and focus group selection, (2) selection of ICT tools and determination of the location of measurement devices, (3) establishment of measurement devices and Kadıköy Environmental Monitoring System (KEMS), (4) dissemination activities.

The project brought the participants together under the roof of the project through the following initiatives:

Announcements for stakeholders

Kadıköy Municipality took the first step by sending a clarification letter to Mukhtar (head of neighborhood), universities and also apartment managers. Thus, the first phases of the project started. 

 

Call for citizens to engage

Secondly, an invitation announcement was made from the Municipality web site to citizens who were willing to take a part actively in this project. 40 people answered the open call positively and 15 volunteers were selected according to the location of their houses. The addresses were chosen from different environmental conditions. Some of them are close to coast or green areas with big trees, some of them are inside high rise buildings, others are low level flats. The reason was to analyze the affection of different urban structures from the heat island effect and air pollution. Besides, it was also important to get accurate measurements from the balconies of those selected volunteers.

Five briefings, a consultant meeting and a webinar were held. In total, 50 people (including the volunteers of the project and scientist) attended these events.

Establishing mini air quality and temperature/ humidity devices at citizen’s balconies and locating stable devices at selected points

Firstly, five mini air quality and temperature/ humidity devices were installed in our Municipal services (Kadıköy Alzheimer Centre, Design Atelier Kadıköy, Göztepe Volunteer Centre, Khalkedon Fenerbahce and Kadıköy Interactive Children’s Library). Moreover, two stable station measurement devices were located in Göztepe Mukhtars Unit and Acıbadem Swimming Pool before the pandemic. Devices are still continuing the measurements. Secondly, 15 household measurement devices were installed in volunteers’ balconies by themselves.

A Dashboard: Kadıköy Municipality Environmental Monitoring System (KEMS)

The KEMS dashboard was developed so that participants and volunteers could easily access the panel from (https://see.airqoon.com). A volunteer can easily follow the measurement devices at his/her home and the measurements (air quality and temperature/humidity) of other volunteers.

While the collected data is followed by the Municipality on the established KEMS website, it can also be followed by the citizens. Distribution maps created by analyzing data such as air quality and temperature on the KEMS website can be easily accessed from a mobile phone or computer. It is expected to add a module to the KEMS website where citizens would report the air quality and temperature they see or feel.

KEMS aims to raise awareness on climate change by creating a resilient structure supported by the local government through participation at the neighborhood level. InCRECA has also been developed in the same direction.

Multidirectional Evaluation Process and Feedback Mechanism (InSPIRES OP)

Twenty-one (21) participants (15 representing civil society; 3, scientists and 3, project managers) registered at the InSPIRES Open Platform to follow and to evaluate the project through online surveys at the four project’s phases, according to the platform.

Developing sub-reports collaboration with scientists and researchers

As an output of the project, the sub-report “Inspires a Glance of Measurement Data” was composed by scientists. Besides, document “The Air Quality Analysis of Kadıköy” has also been composed. All outputs were published on the website (iklim.kadikoy.bel.tr) and the dashboard.

“Refuse what you do not need; reduce what you do need, reuse what you consume; recycle what you cannot refuse, reduce or reuse; and rot (compost) the rest”. Be a Johnson.

Solid waste management is an issue that matters to every single individual in the world. In developing countries, rapid urbanisation, coupled with population growth and rising standards of living has led to an enormous increase of solid urban waste. Cities in low-income countries generate on average between 300 and 600 grams of waste per person per day (Cotton et al., 1999). More than 90% of the waste in these countries is either dumped in watercourses and vacant land or burned close to residents, which poses significant risks to both human health and the environment such as spreading diseases, poisoning the land and water with dangerous chemicals, polluting the air and flooding from clogged drains (Rodić and Wilson, 2017).

Gulu City in Uganda is among seven former municipalities that became regional cities in July 2020. Another eight municipalities will receive city status next year. Gulu City with 146,858 inhabitants has the second highest population in Uganda after the capital Kampala (World Population Review 2016)  —a number which is expected to grow with continuous urbanisation.

In Gulu City, the increasing health risks and environmental problems associated with solid waste are already evident and have been well known for some time. For instance, in 2010, the then Gulu Municipality was listed among 17 municipalities in Uganda to benefit from World Bank funding to construct a solid waste decomposing plant. The facility was meant to process over 70 tonnes of solid waste in a day. This plan, unfortunately, was not executed and waste management handling has remained a huge challenge to the Municipal authorities (Ssalongo, 2013). Therefore, since 2018, a series of regional round tables have been held to address the urgent need to tackle the effects of environmental problems in Gulu and the whole region. During these meetings, poor waste management has been identified as a key problem that is “eating up” the city.

However, although waste is a severe problem, it also offers opportunities. In many countries recycling and composting is a major business, and waste management has enormous potential for job creation. Innovative solutions to solve the problem of poor waste management can be derived from Community-based Participatory Action Research (CBPAR). This approach involves relevant stakeholders, including grassroots communities, in research on a problem identified by the community —in this case waste management— and appreciates their voices, traditions and active contributions to solving the problem (Hall, 2009). CBPAR goes through a continuous cycle of research, followed by action to bring about change and reflection or monitoring and evaluation.

It is against this background that in 2020 a team from academia (Gulu University, Institute of Peace and Strategic Studies and Gulu Centre for Community Based Participatory Action Research), civil society (CEED Uganda) and private sector (AfriGreen Sustain and Takataka Plastics) joined hands with youth from Gulu City to implement the ongoing project “Sustainable Solid Waste Management in Gulu City as an Opportunity for Youth Employment”. The project is funded by the European Union’s Horizon 2020 InSPIRES research and innovation programme. The team has involved the youth in research about challenges and solutions to sustainable waste management in Gulu City with a view to creating job opportunities and become active participants in a newly established waste management innovation lab. This lab focuses on coming up with inventions and experimenting in the area of sustainable waste management and conceptualising business opportunities for the youth and other vulnerable sections of the population.

Key stakeholders from government, civil society, the private sector and development partners were part of the research planning and will discuss the research findings and innovations during multi-stakeholder meetings in the near future. These engagements will set the stage for subsequent actions by civil society and government on waste management and hopefully catalyse a strong and collaborative environmental movement in the northern region of Uganda and potentially beyond.

References

Cotton, A., Snel, M. & Ali, M. (1999). The Challenges ahead – solid waste management in the next millennium. Waterlines, 17(3), 1-5.

Hall, B. (2009). A river of life: learning and environmental social movements. Interface, 1(1), 46–78.

Johnston, B. (2013). Zero waste home. New York: Scribner.

Rodić, L., & Wilson, D. (2017). Resolving governance issues to achieve priority sustainable development goals related to solid waste management in developing countries. Sustainability, 9(3), 404.

Ssalongo, J.E. (2013, April 23) Gulu Solid Waste Management Project Stalls. Uganda Radio Network.

World Population Review (2016)

Air pollution- a modern problem

Air pollution constitutes one of the biggest issues currently faced by modern societies, with dire effects on the health of individuals worldwide. However, some population groups (e.g. people suffering from respiratory and/ or cardiovascular diseases) are more vulnerable to the environmental conditions than others. Despite the significant negative impacts on health that derive from the degradation of air quality, information about the levels of air pollution is still not very easily accessible by citizens.

An InSPIREring project

The hackAIR project, coordinated by DRAXIS Environmental S.A., aimed to empower vulnerable citizens to be involved in community air quality monitoring, to interpret the collected data and to protect their health from air pollution, enabling this way public participation. The initiative focused on London, one of the most polluted cities in Europe, where it is estimated that around 40.000 people die prematurely every year due to air pollution.

A school in Lambeth, south London, participated in the project by engaging children, teachers and parents in air quality monitoring. This particular institution was carefully selected as it constitutes a primary school, i.e. the students are young and therefore vulnerable to pollution. In addition, these children seemed to exhibit a good prior knowledge on pollution, due to a specific curriculum in the UK, and their participation in “The Eco-Warrior Club”; an afterschool club led by children and teachers who wish to learn about climate change and the environment. Moreover, the demographics of the area were taken into account, namely the other than “white British” ethnicity of the majority of Lambeth’s inhabitants. It is considered that air pollution in the area of Lambeth has been documented to disproportionately affect ethnic minorities.

Figure 1 and 2: Pollution at Sunnyhill Primary School in Lambeth

 

Engaging citizens

The pilot implementation of the project lasted for 3 months (October-December 2020), during which the participants were involved in data search, collection, preparation, analysis and visualisation, and finally knowledge creation regarding the subject of air quality. The citizen engagement and the pilot implementation were delivered with the support of Mapping for Change (MfC), an organisation in the UK, where they have a huge network of relevant stakeholders (e.g. schools, organisations that work across health and air quality, etc.) and strong experience in environmental citizen science

Figure 3: Mapping for Change website

Participants were able to measure outdoor air quality by possessing low-cost sensing devices, and access and visualise air quality data from heterogeneous sources (citizen-generated and publicly available open data) via the already available hackAIR platform (https://platform.hackair.eu/), developed by DRAXIS. It should also be noted that they received regular support to ensure that their devices were still in place and functioning properly.  Parents were incentivized to look at their sensing device’s results via the hackAIR platform through the regular support provided by the Mapping for Change.

Despite some few difficulties in the implementation of the citizens science activities which originated from the COVID-19 pandemic and had to be overpassed during the pilot implementation phase (e.g. organisation of physical workshops), the results of the hackAIR project deployed in the school in Lambeth were overall positive. All the engagement was done online and reached a total of 15+ pupils and at least 9 parents.

Pupils showed an interest in understanding the specifics of air pollution and were keen to learn how to interpret graphical representations of pollution concentrations for pollutants such as PM₁₀ and PM_2.5. Pupils were ecstatic to use their own sensing device, and showed an interest in understanding how different levels of air pollution impact their health. For this reason, in the context of the project, they were provided with sensing devices, connected on the hackAIR platform, so that they check the air pollution levels in their school environment.

A successful ending

Overall, the project was quite successful.

Parents gained an understanding of the differing levels of pollution found at home by using individual sensing devices, and were inspired to take action at school level. In addition, the series of workshops that took place during the project enabled to answer parents’ queries in relation to air quality policies and regulations, particularly regarding what concentrations are considered harmful, by which institutions and for which demographics. Finally, the project enabled parents to create the basis of a parents’ network, whereby all are inspired to take action at the school level and more knowledgeable of individual and collective means existing to tackle air pollution.

As mentioned above the project facilitated the creation of a small network of parents keen on dedicating time to improving air quality at school. This has enabled teachers to identify these parents and contact them in the future to encourage their participation in future campaigns at the school level, as the anti-idling campaign proposed during the last event of the programme.

Regarding pupils, the project offered a sound background to the main aspects of air pollution. In terms of learning outcomes, they had the chance to explore what ‘air pollution’ means, the different types of gas and non-gas pollutants found in the atmosphere, how scientists currently monitor air pollution, and how low-cost sensing devices such as those used at this InSPIRES Open Call project can enable anyone to get an understanding of how polluted the air is. Children displayed a good understanding of the concepts and engaged quite well with the material provided, specifically when reading different graphs – which required a bit more effort.

 

In the last inspiring story signed by the Living Lab for Health at IrsiCaixa we presented the development of a participatory research agenda on HIV/AIDS and other Sexually Transmitted Infections (STIs) prevention with the contribution of different stakeholders. If you could not read it… check it out!

But, how were the results of the research agenda used? How did the project continue after identifying the top 10 priorities for research on HIV/AIDS and other STIs prevention?

After the priority setting, we implemented Science Shop projects focused on some of the identified priorities during the academic course 2017-18. A total of four participatory research projects were implemented with an open and inclusive approach. The projects were conducted by Master students, mentored by professionals and researchers, and were designed and implemented in collaboration with different stakeholders. They were carried out with the support of the EC projects InSPIRES and Xplore Health.

Which were the steps conducted to develop the Science Shop projects? We invite you to get inspired by the process we carried out: 

Recruitment of master students to meet the research priorities

The Living Lab for Health at IrsiCaixa contacted different universities to present them of the importance and value of engaging in Science Shop research projects. Eventually, the universities disseminated master theses project proposals on the priority topics to recruit higher education students.

Students from different masters and backgrounds were engaged: Master degree in Clinical Research and International Health (UB-ISGlobal), Master degree in Global Health (ISGlobal), Master degree in Science Teacher Training (UPF-UOC) and Master degree in Specialized Communication (UB).

The Master students were invited to join the Co-ResponsaHIVlity project during the priority setting process to obtain the top 10 priorities for research on HIV/AIDS and other STIs prevention, from which they were invited to choose their research topic.

The Living Lab for Health facilitated counselling on RRI and participatory methodologies to the Master students to make sure the projects were open and inclusive.

Engagement of communities and stakeholders involved in the topic

In parallel, the Living Lab initiated contact with communities affected and interested in taking part in the projects.

Particularly, the secondary school community showed great interest in participating and incorporating science shop methodologies, and agreed to take part in three of the projects. A total of 450 students and teachers from 13 educational centers were engaged.

Each master student was assessed by an expert from the Living Lab, representatives of different civil society organizations and a researcher thesis mentor, who were specialized researchers from different sectors:

• From the Center for Epidemiological Studies on STIs and AIDS in Catalonia (CEEICSAT)
• From the Research Education on Health Sciences (UPF)
• From the Barcelona Public Health Agency (ASPB)

Finally, the four arranged projects were the following:

• Exploring the perspectives of secondary students in Catalonia regarding HIV diagnostic tests. More information here.
• Community-based participatory research project on HIV-related stigma in collaboration with secondary school students. More information here.
• Affective and sexual education in secondary education: development of an integrative proposal in the school curricula prepared in collaboration with secondary students. More information here.
• Design of a campaign to promote the HIV test in a social sex network based on the analysis of user needs. More information here.

Design and implementation of the projects with a Community Based Participatory Research approach

The four projects were designed with co-creation processes and constant feedback between the stakeholders involved. The projects took a Community Based Participatory Research approach and pursued the increase of knowledge, a boost in learning and the promotion of action to achieve social change.

For example, one of the research projects aimed to examine the HIV-related stigma among youth and its influence on prevention and diagnostic. To do so, the participants learned, developed knowledge and, based on it, developed proposals for action to achieve social change. During the research process participants concluded —through different participatory reflection activities— that the existence of HIV-related stigma might be a problem among youth, which could potentially hinder prevention and diagnostic. Through learning and self-reflection, participants identified needs that youth have (mainly related to increasing HIV knowledge), normalizing the disease, reducing stigma, and became active agents to change the situation by developing public campaigns and informative activities for other youngsters.

Dissemination of the results

Finally, the projects were presented in a closing congress. Round table discussions were conducted by students, teachers, master students and supervisors, explaining the different phases of the research projects, the knowledge acquired and the actions taken. Parallel workshops were also facilitated to discuss the competences acquired, the results obtained, the change achieved and recommendations for future approaches for action.

Among the assistants and participants there were members of HIV epidemiology research projects, members of CSOs, and members of the Education and Health Departments of the Government of Catalonia.

Final Congress (CosmoCaixa, 6 th June 2018)

 

Dissemination of the projects in a Spanish newspaper (17^th June 2018)

Type 2 diabetes and high blood pressure: real public health burden 

Type 2 diabetes (T2D) and high blood pressure (HBP) are a major public health problem worldwide. These complex metabolic diseases lead to serious degenerative organic complications leading to disability and death. 1.6 million people will have died from diabetes in 2016. In fact, World Health Organization (WHO) estimates that diabetes was the seventh leading cause of death in 2016. HBP, a silent killer that promotes heart and cerebrovascular accidents, currently kills 7.5 million people a year, about 12.8% of the total of all deaths.

According to the International Diabetes Federation (IDF), 425 million people worldwide have diabetes. The IDF describes the phenomenon as a real pandemic, as the progression is considerable. Thus, the WHO (World Health Organization) predicts 622 million diabetics by 2040. The prevalence of HBP ranges from 30 to 45% in the general population.

The situation in Tunisia

In Tunisia, the prevalence of diabetes increased from 9% in 2007 to 15% in 2017, while hypertension was estimated at 30.6%.  Hence, public awareness on the importance of healthy eating and physical activity as conditions for a better future can be raised especially among children and adolescents. Also, primary care health professionals need to be properly trained in diabetes and HBP prevention and care, and provided with the necessary screening tools and medications. In addition to this alarming epidemiological finding, it has become apparent that the complications of these diseases weigh very heavily in the balance of health problems.

In our country, screening for these diseases is insufficient, particularly outside the capital and in rural areas where there is a major problem of access to health care facilities. The management of these diseases is also inadequate.

The Zaghouan Regional Diabetes CSO “blew the whistle” 

The Zaghouan Regional Diabetes Association has identified a major problem in the screening and management of T2D and hypertension in the Zaghouan region (50 km from Tunis). Within the framework of the call launched by the Institut Pasteur de Tunis (IPT)’s Science Shop “Science Together”, to collect social needs from Tunisian civil society, the Zaghouan Regional Diabetes Association expressed a need to study the epidemiological statue of T2D and HBP in the region.

New collaborations were born 

This need was selected by the IPT SS and a new collaboration has been established between the the Zaghouan Regional Diabetes Association and the Laboratory of Biomedical Genomics and Oncogenetics (known for its experience in the multidisciplinary investigation of metabolic diseases) at IPT. Other regional and national stakeholders in the field of health are also involved in this project which extends over a period of 17 months from February 2019.

Indeed, this work is co-created by researchers from different scientific backgrounds (doctor, epidemiologist, nutritionist, sociologist, student.) from different state institutions: Institut Pasteur de Tunis, Regional Hospital of Zaghouan, the department of diabetology and nutritional diseases in the Nutrition Institute of Tunis and the Direction of Care and Basic Health, with the support of private partners. 

A collaborative project with big ambitions

After the approval of the biomedical ethics committee of IPT, a study will be realized from 400 voluntary participants. During patient recruitment campaigns, anthropometric, demographic, nutritional, and genealogical data will be collected.  Biological material samples (blood and urine) will be collected for biochemical analyses. All the data collected and generated will be analyzed by statistical tools.

The data collected as well as the results obtained will allow a better understanding of the epidemiological situation of T2D and HBP in the Zaghouan region. Indeed, our study will allow also for a better understanding of the causal links between these two diseases and the different clinical and environmental factors.

In addition, our project seeks to make scientific research and the data it produces accessible to all people at all levels of society. Through this study, we will provide the Ministry of Health with an official figure on the prevalence of diabetes and hypertension in the Zaghouan region.

This will allow to improve the management of diabetic and/or hypertensive patients, to better follow the evolution of these two diseases and to prevent their degenerative complications. Thus, there will be an improvement in the patient’s quality of life and a reduction in the costs of care.

During this project, presentations and awareness-raising camps will be conducted by the student involved in the project to health workers at the Zaghouan Regional Hospital and hospitalized patients in order to reinforce the concept of open science and science for all.

Taking into account its great socio-economic impact, the DiaTensioZag project can be a pilot project for the epidemiological study of T2D and HBP for other regions in Tunisia.

Is it possible to increase the social impact of Research and Innovation (R&I) through implementing changes in its governance, integrating systemic reflexive processes, co-creation and multistakeholder engagement?

That is the ambition that the Science Shop at the Living Lab for Health at IrsiCaixa AIDS Research Institute has since its creation. The Lab has been working, learning, designing and refining its projects with this aim since then. The project presented in this inspiring story has been focused on the promotion of sexual health and the prevention of HIV and other Sexually Transmitted infections (STIs).

The initial challenge: HIV infection and the Co-ResponsaHIVlity project

Human immunodeficiency virus (HIV) infection and acquired immune deficiency syndrome (AIDS) are one of the health threats of major concern in the last decades. Although the number of new HIV infections have dropped globally, in 2018 around 37.9 million people were living with HIV worldwide. In Catalonia (Spain), where the Lab is located, the number of new HIV diagnoses was about 8.1 cases per 100,000 population (2015), which is above the European average of 6.2 per 100,000.

To drive progress towards reducing the epidemic, the Co-ResponsaHIVlity project was set up in 2017 as a pilot project of governance for the eradication of HIV and other Sexually Transmitted Infections (STIs) to contribute to the transformation of the R&I system to make it more open and inclusive. This is in line with the priorities of the European Commission and the project InSPIRES, i.e. to promote Responsible Research and Innovation (RRI) along with Open Science and Open Innovation.

Creating a Research and Innovation agenda on HIV/AIDS and other STIs Prevention

In the first place, the objective of the project was to co-define a “Research agenda on HIV/AIDS and other STIs Prevention”, which contemplated the needs, priorities and expectations of the different stakeholders of the system, before designing, piloting or implementing any project.

This phase started with a consensus of workplan after meetings with different stakeholders as well as with the development of a stakeholder analysis in order to identify the key actors that should participate in the agenda setting. Different iterations were conducted, first with the Secondary School community and afterwards with other experts from different disciplines:

1. Exploring the R&I needs of the secondary school community

In 2017 the secondary school community was encouraged to join the challenge of participating in the R&I agenda setting. To do so, first of all a training programme was launched for them on the topic. The objectives of these trainings were not only to specialize the students on the thematic, but also to empower the educational community to be able to participate in the different phases of the deliberative processes of the agenda setting. A total of 16 educational centres participated.

Next, a workshop was carried out in each educational center to identify and prioritize the problems, needs and opportunities, and the solutions in the shape of research and innovation of the adolescents regarding HIV/STIs prevention. A preliminary agenda was integrated with the input of the different students and was presented in a final Congress with more than 400 students (Barcelona, 2017).

This phase of the project was carried out with the collaboration of the European projects EnRRICH and Xplore Health.

2. Exploring the R&I needs of other stakeholders

Experts from different scientific disciplines, healthcare professionals, public policy makers, experts from civil society organizations, communication and education experts and master students participated in different workshops to complete the agenda with their contributions. This stage took place between July and December of 2017, with the collaboration of the InSPIRES project.

Parallel workshops to set the priorities were conducted with experts organized in four groups: biomedical prevention and barrier methods, education and communication, civil society organizations, and behavioral and structural aspects experts. 25 stakeholders participated in these workshops.

The results were integrated in a final document together with the inputs of the secondary school students. After that, the different actors prioritized online 15 items of the agenda.

Finally, on February 2018 a dialogue meeting with all the stakeholders together was conducted to validate the agenda.

Top 10 priorities identified

These were the top 10 priorities regarding HIV&STIs prevention identified during the participatory deliberative process:

1. HIV-related stigma and discrimination
2. Gender perspective in research projects and prevention interventions
3. Risk perception of contracting HIV/STIs and its consequences
4. Consideration of Sexual and Reproductive Health Rights in a transversal way in all prevention interventions
5. Shift in sexuality: Influence that culture and values regarding the types of sexual relations have on prevention.
6. Promotion of Affective-Sexual education in formal education
7. Promotion of HIV testing
8. Promotion of alternative methods to condoms for certain groups in combination with non-medicalized interventions
9. Promotion of a model of co-responsibility in decision-making
10. Rigorous evaluation methods

What was achieved with the agenda?

This process was very valuable for many reasons. First of all, a preliminary list of R&I on HIV and other STIs prevention was developed, gathering the opinions and inputs of all the different actors which intervene in the system. This is a significant point, since it contributes to democratize, legitimate and the most importantly, increase the likelihood of R&I to have higher impact, by integrating knowledge and experience that help a more robust decision-making process.

Moreover, during this deliberative process priorities that were not among the current frontline R&I priorities emerged, and that had been undervalued and disdained. One example that stood out was HIV-related stigma, which was identified as one of the key obstacles to the prevention, care and treatment that should be addressed to create an effective and sustained response towards HIV epidemic.

Furthermore, the process promoted the development of competences, synergies and mutual learning among the participants. For instance, some actors disagreed on how some items of the agenda had been expressed, appealing that they could be stigmatizing, and made new proposals to agree on a common and shared vocabulary. For example, some actors proposed that the relation model between physicians and patients should be improved and changed into a model that “made it easier for the patient to take responsibility and perceive risk”. Other actors argued that this statement was stigmatizing because all the burden of responsibility was given, again, to the patient. Thus, it was proposed to reformulate it and emphasise the importance of changing the current biomedical model that focuses on risks to a model that informs and accompanies patients in decision-making in a framework of sexual rights.

But, how were all these valuable results used at the end? Has this project had any continuity? If you want to know how different priorities were implemented through Science Shop projects or how strategic reflections have evolved since then… pay attention to the release of the next Chapter of the Co-ResponsaHIVlity project within our Inspiring stories in this website!

By Nadia Ben Manssour

Since 1980, the number of newly reported HIV infections had doubled in several regions of the world. At the same time, recent advances in biological sciences and clinical research had successfully improved screening, virological monitoring and treatment efficiency of HIV. Thanks to Anti-Retroviral Therapy (ART), the survival and the life quality of people living with HIV had greatly improved. In fact, countries adopting the ART therapy had shown the lowest HIV-related morbidity and mortality rates.

Nevertheless, high levels of adherence to ART (at least 95%) are needed to keep an undetectable viral load and to ensure optimal benefits for the patient. It is also important to insure better clinical outcomes as well as preventing sexual transmission to negative HIV persons.

In Tunisia, despite the country policy against HIV infection, the rate of new cases increases to 12% between 2010 and 2017. Hence, it’s crucial to ensure an appropriate and better management of HIV patients quantitatively and qualitatively by providing and ensuring the adherence to the treatment (more than 95%). This fact aligns with the alarming current situation of persons living with HIV (PLHIV), characterized by the emergence of drug resistance and the deterioration of PLHIV health status. It should be emphasized that several reports have been published about HIV/ AIDS care, but none was published on implementing interventions to enhance PLHIV adherence.

Within the framework of the call launched by Science Shop “Science together” to collect social needs, ATP+ (Association Tunisienne de Prévention Positive), an association involved in promoting better care for persons living with HIV, submitted the need to communicate experiences of PLHIV with health care support in Tunisia. ATP+ co-created the project with researchers from different scientific backgrounds (doctor, epidemiologist, sociologist) from different institutions: Institut Pasteur de Tunis, National Public Health Institute and Tunis Institute of Human Sciences. This work was first approved by the biomedical ethics committee of Institut Pasteur de Tunis (IRB) after the elaboration of related informed-consent forms for all the project participants.

An original research design was performed based on reformulation of the ATP+ request, in order to inform about factors behind non-adherence to treatment among PLVIH. The overall aim of this Science Shop project is to improve future intervention designs applicable at the health structure level.

The study consists on the design of qualitative original research through interviewing PLHIV and stakeholders (health care workers, program manager at the Ministry of Health, international organizations, etc.) from different perspectives in order to compare points of views and highlight the contradictions and agreements. In depth interviews with 10 PLHIV who benefit of ATP+ services, as well as semi-structured interviews with 10 stakeholders were planned. The interpretation of the different points of views will be helpful to ensure a global vision of the assessment, as well as the applicability of the recommendations. During eight months, a master student was selected and trained to perform, transcript and analyze the interviews with the assistance of the ATP+ team. Preliminary results and the process assessment of this collaboration will be communicated in February 2020 to the public and policy makers.

Text & photos: CEADES Foundation – Bolivia

After the submission of three Public Health Master’s theses that aimed to meet demands of people affected by Chagas disease, we proceeded to the restitution of the results. As it has been already shared at this webpage, the restitution reached: The Association of Chagas’ Patients “Corazones Unidos”, the general public of the endemic region of Cochabamba (Bolivia) —through a TV broadcasting to an estimated audience of 35.000 people—; the medical residents and personnel at the Punata regional hospital “Manuel Ascensio Villaroel”; and several groups of students in health sciences at Universidad Mayor de San Simon (UMSS), Cochabamba’s public university.

Here are some of the recorded reactions of the students that attended those restitution sessions: “What I found very interesting is that, with the methodology of “Science Shop”, you communicate the results and you can solve problems of the people. Doing this kind of research, close to the community, knowing that you will share the results of the research, is very attractive and positive for us during our nursing career.” (Giovanna Mamani, member of the Scientific Society of nursing students, UMSS).

“Although the study has taken place in Punata, it is very important for all of us who will perform research in the future to know the results too; because it is not just about giving results to the target population, but also to other researchers, for them to know what has been done, how it has been done, and what more can be done.” (Eddy Cossio, member of scientific society of medical students, UMSS).

“Science and Society…. These words call my attention and raise a lot of questions. I think we have to carry out scientific works in this way, focusing on the community. Also, I am very fascinated with the fact of returning the results to the community; since, normally, we keep and file our research works and never give them back to the concerned population.” (Marisabel Villaroel, medical resident, Hospital “Manuel Ascensio Villaroel”, Punata).