Over the past 30 years, the idea and practice of laypersons or representatives of civil society participating in processes of research and innovation has gained increasing significance. A milestone in this debate was Epstein’s study (1996) that demonstrated how AIDS activism in the USA had an important impact on the process of research, including setting the research agenda. The influence was effective with regard to research outcomes but also disruptive in relation to the scientific research process itself, by blurring the boundary between science and the public. In this sense, a vast number of studies have been carried out with respect to the role and impact of non-academics in the field of scientific research (Rabeharisoa and Callon 2004). A similar dynamic can be observed when involving individuals in the early stages of knowledge generation, where it is akin to the idea of open innovation (West and Bogers 2017). As participation of civil society actors is seen as a key resource for improving processes of research and innovation, these debates are grouped under the terms upstream engagement (Escobar 2014) or even citizen science (Irwin 2002). All these ideas represent typologies that highlight interaction between research (or researchers) and civil society actors as the core feature (Fig. 11.1).
Traditionally, literature on research design focuses on how to practically define a scientific process. Recently, this has moved on to how to implement, for example, more visual or digital methods (Rogers 2013); however, this is usually from the perspective of the principal researcher as the main decision-maker. This also applies in scientific teams, where crucial research design steps are usually informally negotiated. There is significant literature discussing collaboration between civil society as well as CSOs and the scientific community. This literature, mainly based on the analysis of case studies, challenges specific aspects of collaborations, such as the ‘expert–lay divide’ and the issue of undone science – which refers to areas of research sometimes left unfunded, incomplete, or ignored, for not being of interest to the political and economic elites but that social movements and CSOs identify as worthy of investigation.
Some authors suggest that increasing the involvement of CSOs in research corresponds with improved research results, especially with regard to embedding contexts and wider society (Hickey et al. 2018). In parallel, originating in the design sphere (Sanders and Stappers 2014), co-creation approaches are increasingly being extended to the political, social, cultural, and scientific spheres, in line with increasing public participation in collective decision-making processes. Regarding citizen science practices, for example, in the context of health-related and environmental science, fully co-created projects are still rare: the majority of citizen science projects rely on participation only for the collection, and sometimes the analysis, of large-scale observations, in order to overcome the capacity of current research structures (Kullenberg and Kasperowski 2016). While not all citizen science projects are intended to achieve in-depth public participation, evidence suggests that research results can be significantly shaped by the degree and quality of public participation in project design (Shirk et al. 2012). At the same time, recent studies highlight a motivational framework for volunteers that exceeds data collection, where the wider social impact and cognitive, affective, social, behavioural, and motivational dimensions are all relevant (Phillips et al. 2019).
The motivational framework also relates to participatory action research (PAR) and other community-based research practices, where a diversity of non-professional and nonacademic researchers can be fully involved in the investigation process. Participants can then collaborate with researchers in practical or pressing issues at the local level, representing the needs of different organisations and communities (Reason and Bradbury 2001). Citizens or CSOs can also take the initiative and lead the research in collaboration with the researchers, as seen in some recent citizen science projects. Here, citizens are not considered qualified research assistants but rather coresearchers; they are able to design and implement, jointly with scientists or in an autonomous way, valid and robust research processes (Kimura and Kinchy 2016). In order to implement these approaches, inclusive processes must be used in conjunction with the development and adaptation of robust methodologies, allowing for the social concerns of citizens and local communities to be specified and expressed (Senabre Hidalgo et al. 2018). This requires integrating these problems and challenges into the research cycle at its onset and then facilitating the participation of groups of citizens or CSOs in all phases of the research process. It also demands adequate participatory infrastructures, for example, science shops, as intermediaries between civil society groups (e.g. trade unions, consumer associations, non-profit organisations, social groups, environmentalists, consumers, residents’ associations, etc.) and the scientific community.
Throughout the research process, a participatory and social impact-oriented research cycle needs to follow specific iterative and reflexive steps from a co-creation and participative perspective (Fig. 11.2).
The four case studies that follow reflect how co-creative and participatory processes unfold in different social contexts, local settings, and communities of practice.
Case Study 1: OpenSystems – Participatory Design in Citizen Social Science
An emerging practice, termed citizen social science (Kythreotis et al. 2019), serves as our first case study to provide insights on whether and how co-creation should be adopted in research design. Citizen social science (see also Albert et al., this volume, Chap. 7) can be understood as co-created research that builds on participatory social sciences approaches or social concerns expressed by diverse groups of citizens (Bonhoure et al. 2019).
Citizen social science is intended to facilitate participants’ contribution to research. Their unique expertise comes from everyday experiences, including of their neighbourhoods, health (Cigarini et al. 2018), gender discrimination (Cigarini et al. 2020), and climate action (Vicens et al. 2018). Following a horizontal approach and a distributed expertise model (Nowotny 2003), participants can be considered competent in-the-field experts and therefore able to produce socially robust knowledge.
In order to enact co-creation in citizen social science, it is key to establish a process and associated tools that combine materials and instructions, in order to facilitate the participatory design of projects (Senabre Hidalgo et al. 2018). OpenSystems developed tools for knowledge generation, each associated with a reflexive research stage (see Fig. 11.3). The tools were tested and refined during six co-creative processes using a series of activities based on alternate phases of divergence and convergence, a fundamental principle of research design (Sanders and Stappers 2014).
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The first sequence generates ideas and possibilities in a participatory way; the sequence of divergence is normally enacted through the formation of subgroups.
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In the second sequence, the participants jointly select options; the sequence of convergence is enacted through pooling and decision-making mechanisms, as reflected in Fig. 11.3.
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During the convergence steps, collective decision-making is achieved through dot-voting, or dotmocracy, and thermometers of concepts.
Accessibility was emphasised with the aim of making the tools clear and attractive to a diverse public. In particular, the visual language was kept as simple as possible, and easy-to-understand icons were used. Gamification strategies were also integrated, based on feedback from participant focus groups.
This approach to citizen social science was developed by OpenSystems from the Universitat de Barcelona in different research contexts. The first was STEM4youth, a project from the European Horizon 2020 research and innovation programme (2016–2018) to encourage young people to study science and pursue technology careers. A series of co-creation experiences were organised to design citizen science projects with 4 groups of teenagers (128 teenagers in total) attending secondary schools in Barcelona, Spain, and Athens, Greece. The same approach was used in the project Neighbourhood Water, which engaged a group of youth members from the Itaca Association in early 2019. This association, located in the Collblanc-La Torrassa district in Barcelona (one of the most population dense and diverse in Europe), is aimed at providing youth social education. Finally, this co-creative strategy was used in the framework of a Barcelona Public Libraries Network initiative to reformulate the role of librarians and public libraries in local communities. Building on the idea of libraries as community hubs, librarians acted as mediators for a co-created research design, with a community of library users (45 on average) acting as coresearchers. Adopting these co-creative processes resulted in a number of behavioural projects being undertaken with engaged communities of citizen scientists (Perelló et al. 2012).
Case Study 2: Kubus Science Shop at Technische Universität Berlin (TUB)
Science shops provide independent, participatory research support and carry out scientific research in a wide range of disciplines. They are often, but not always, linked to or based in universities. If university based, research is often carried by students as part of their curriculum, under the supervision of the science shop staff and other associated university members (as in the Boutique des Sciences Lille Science Shop). Science shop facilitators are experts in the field of cultural translation and reflexive practices. Through their local, national, and international contacts, science shops provide a unique antenna function for society’s current and future demands on science.
Two of the most pressing issues of our time are the reduction of resource consumption and greenhouse gas emissions. The growing use of electronic equipment in everyday life and the waste derived from consumer goods result in significant social and environmental costs worldwide. The term throwaway society addresses this negligent, yet socially normalised, attitude towards resource consumption. On the other hand, cities are a focal point for social innovations, such as in the repair and do-it-yourself (DIY) movements (Frick et al. 2020), which offer a practical solution. Citizens can (re)gain the ability to handle their consumer goods competently and learn what they need to do in the event of either repair or programmed obsolescence. In this sense experts, hobbyists, and amateurs are all looking for solutions to global technological production and consumption problems. This can take place via specific online forums, or in face-to-face groups, such as repair cafes (Keiller and Charter 2016), FabLabs, hackerspaces, and makerspaces (Becker and Zacharias-Langhans 2014). In these social and technical contexts, it is important to generate robust knowledge about reduction in environmental impact as part of community empowerment (Scheumann and Becker 2014).
There are more than 40 such initiatives in Berlin alone. In 2015, Kubus, the Science Shop of Technische Universität Berlin (TUB), supported the founding of the Repair Café Brunnenviertel in the district of Wedding. In addition to meeting a shared need and interest in repairing electronic tools, hardware, and other types of machines, repair cafes are places where social networks can be strengthened and social capital can be developed (Keiller and Charter 2016). In this context, diverse communities emerge that can explicitly or implicitly promote a new appreciation of resources and their efficient use, quality, and longevity, encouraging sustainable consumption in the long term. Kubus initiated a collaboration between UTIL (the TUB Environmental Technology Integrated Course) and the Repair Café Brunnenviertel. They adopted a co-creative and participatory approach that sought to facilitate aspiring environmental engineers to provide life cycle assessments of CO2 savings, focusing on repair groups of 3–5 students each summer semester. Integrating university students and citizens from the repair community, the first group showcased their research results at the Repair Café Christmas party, providing concrete insights on how to evaluate CO2 savings. This type of research-based service learning (Becker et al. 2018), as part of a student-organised course, enables students to engage in transdisciplinary participatory research (Fig. 11.4).
With these practical experiences, Kubus allows a knowledge-based dialogue on teaching everyday skills and competences, which makes it possible to address the social responsibility of academic education on two levels: first, in the ‘here and now’ of pragmatic cooperation between students and civil society actors and, second, in the experiential education of aspiring engineers and scientists participating as students in these courses. Kubus sought to improve approaches to hands-on academic education. Their participatory approach helped students to self-organise explorative and research-oriented learning, encouraging them to present and discuss their project designs not only with their teachers but also with the repairer community.
Case Study 3: Procomuns – PAR and Co-creation of Public Policies
Procomuns, led by the Dimmons research group from the Universitat Oberta de Catalunya (Spain), focused PAR on citizen participation in policymaking in the fields of social and solidarity economy and the platform economy. Procomuns was a 3-year explorative study, between 2016 and 2019, analysing how co-creation dynamics in the social sciences can contribute to the participatory definition of public policies and agendas in a local context. Project participants (more than 400 people from diverse backgrounds and perspectives) were involved in a co-creative policymaking process that resulted in 87 policy measures. The central topic of research was the platform economy (also called the sharing economy or the collaborative economy). This refers to the collaborative consumption and production of capital and labour among distributed groups supported by a digital platform. Examples range from shared vehicles to food delivery to home sharing. Several questions were raised about which public policies to adopt, and how policymaking with a citizen science approach can adapt to, take advantage of, and respond to the platform economy, its effects, and potential.
In this regard, the goal of Procomuns was threefold: first, to develop a state of the art on the topic of platform economy, which is an emerging issue in the academic literature on policymaking; second, to generate new knowledge interchange dynamics with reference to Barcelona regarding socio-economic challenges; and, third, to develop co-created policy recommendations based on PAR approaches that could have a positive impact on the city from different perspectives (sustainability, work rights, data ownership, etc.). For this, a series of mechanisms and channels of co-creation were established based on diverse approaches, such as the digital commons (Senabre Hidalgo and Fuster Morell 2019), open design (Boisseau et al. 2018), and a temporary policy design lab.
In the first participatory design phase, a strategic analysis was carried out among a small group of 12 representatives (from civil society, digital entrepreneurship, politics, and academia) from the platform economy and social and solidarity economy. The aim was to evaluate the strengths, weaknesses, opportunities, and threats of the platform economy in the Barcelona context, following SWOT analysis methodology (Martin and Hanington 2012). In the second phase, members of the initial work group and additional participants drafted an online document with possible approaches for new policies. This collaborative text collected draft proposals and specific policy measures to guide the platform economy promotion activities of Barcelona City Council. In the third phase, a face-to-face co-creative session adopted a theory of change model (Martin and Hanington 2012), in order to generate concrete proposals for long-term change, and the steps needed to achieve them. A key priority in this phase of participatory generation of policies was to establish a thematic clustering of proposals with a card sorting technique, used in the fields of knowledge management and user experience design.
In the fourth phase, the project expanded the collaboration process by holding a celebratory Procomuns community event on the platform economy. It was conceived as a co-creation meeting beyond the conference format, including local associations, relevant city actors, international experts, political leaders, and citizens. Collaborative working sessions covered themes, including general regulatory measures, technological developments, tourism, mobility, housing, social inclusion, health and care, and job conditions.
In the final phase, the list of public policy proposals was uploaded, discussed, and voted on online, coinciding with the broader public consultation process to define Barcelona’s Municipal Action Plan (PAM) via the Decidim online platform (Aragon et al. 2017). This gave additional visibility to Procomuns outputs via social networks and importantly provided refinement and social filtering of co-creative results, generating additional public engagement.
Case Study 4: The Duchenne Project – When a CSO Leads the Research Process
An example of CSOs and community-based forms of collaboration is a technology development project that focused on orthoses, more specifically on the correction of limb disorders to support the movement of the upper limbs of children with Duchenne. Duchenne is a type of muscular dystrophy which only affects boys and significantly reduces life expectancy.
The project was driven by the French National Association of Parents of Duchenne Sufferers. The CSO collected funds to set up a foundation to prepare proposals to undertake research that would help patients to regain some movement of their upper limbs. Upon successful creation of the foundation, the CSO managed to attract further co-funding from other related CSO. It then managed to work with relevant scientists to produce a proposal for a national funding call. The CSO was the driving force behind the project, assembling the key actors, notably a leading scientist who served as the guarantor of the scientific quality of the project. The social interaction within the project went far beyond this, however, enabling formal interactions at the project review stage and, arguably more importantly, frequent informal interactions in the form of meetings, telephone conversations, and so on.
The project design was clearly aligned with the aim of producing practical outcomes in the form of technologies that could be used by patients. This vision of the project as highly practice oriented was clearly communicated to all partners. This was accepted and reflected by everybody interviewed for the case study. The choice of participants was driven by this practice-oriented ethos, as well as agreed with the researchers. The CSO not only initiated the project but had a pervasive influence on its development and culture.
As an indicator of the CSO’s impact in terms of knowledge production, it is important to underline that the research agenda was identified and informed by the CSO’s local knowledge. There is an enormous amount of research that has been undertaken to alleviate the suffering of Duchenne patients. The vast majority of this research focuses on the medical condition itself and aims to develop drugs that extend the lifespan and improve the quality of life of patients. The CSO, as an association intimately involved in the day-to-day lives of patients, identified the fact that for the Duchenne sufferers themselves, the loss of movement of their arms can be perceived as worse than their reduced life expectancy.
One notable aspect of this project was the CSO’s prior engagement in research and its experience of being able to influence research that was better targeted to the interests of Duchenne patients. The CSO had been involved in pharmaceutical research for Duchenne patients which, at the time of the project’s launch, had resulted in a clinical study that had attracted several hundred million euros in research funding. This success arguably provided the CSO with the confidence to engage in the next step and drive through a research agenda collaboratively defined for the benefit of the patients.
The main advantage of a participatory approach was that the process of doing research together not only produced a co-created result that was widely shared and implemented. It improved the living conditions of patients and created new knowledge for medical support.