Co-ResponsaHIVlity project: setting research priorities with and for different stakeholders
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:
- 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.
- 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:
- HIV-related stigma and discrimination
- Gender perspective in research projects and prevention interventions
- Risk perception of contracting HIV/STIs and its consequences
- Consideration of Sexual and Reproductive Health Rights in a transversal way in all prevention interventions
- Shift in sexuality: Influence that culture and values regarding the types of sexual relations have on prevention.
- Promotion of Affective-Sexual education in formal education
- Promotion of HIV testing
- Promotion of alternative methods to condoms for certain groups in combination with non-medicalized interventions
- Promotion of a model of co-responsibility in decision-making
- 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!