Ingenious Science Shops to promote Participatory Innovation, Research and Equity in Science
D4.2: Analysis and report on social demands and Research Agendas emerging from different territories Are InSPIRES Science Shop projects responding to unmet social demands?
Submission date: 30.06.2021
File name: D4.2. Analysis and report on social demands and Research Agendas emerging from different territories. Are InSPIRES Science Shop projects responding to unmet social demands?
Dissemination Level: Confidential, it will be made public only after publication in scientific journal by project parnter
Author(s): Estany, A.*, Piro, F.**, Aksnes, D.**, Malagrida, R.*
*Living Lab for Health at IrsiCaixa, Spain (InSPIRES WP4 leader) **Nordic Institute for studies in Innovation, Education and Research (NIFU), Norway TABLE OF CONTENTS
EXECUTIVE SUMMARY ...... 3
1. INTRODUCTION ...... 4 1.1. Historical background and role of Science Shops in responding to social needs ...... 4 2. CONCEPTUAL BACKGROUND ...... 6 3. METHODOLOGY ...... 8 3.1. Constitution of the research team ...... 8 3.2. Data collection...... 8 3.3. Inclusion criteria and data selection ...... 9 3.4. Unmet research types analysis ...... 10 3.5. Unmet social demands analysis ...... 11 4. RESULTS ...... 12 4.1. InSPIRES projects sample description ...... 12 4.2. Results of the analysis of the unmet research types ...... 17 4.3. Results of the analysis of unmet social demands ...... 23 5. DISCUSSION ...... 23 5.1. InSPIRES implication in responding to social demands ...... 23 5.2. InSPIRES implication in responding to unmet research types ...... 24 5.3. InSPIRES implication in responding to unmet social demands ...... 26 5.4. Limitations ...... 26 6. CONCLUSIONS ...... 27 7. REFERENCES ...... 28 Appendix A……………………………………………………………………………………………………………………………. 30 Appendix B……………………………………………………………………………………………………………………………. 31 Appendix C……………………………………………………………………………………………………………………………. 32 Appendix C……………………………………………………………………………………………………………………………. 33
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EXECUTIVE SUMMARY Background and objective Although there is not one dominant organisational or operational model to define a Science Shop, they all share the same aim of responding to social demands with a bottom up approach. However, there is a need for further evidence on the contributions of Science Shops to respond to social demands that are unmet needs. Prior investigations compared the research priorities addressed in registered trials with the research priorities identified by patients and clinicians, and concluded that there was a mismatch between them. Patients and clinicians emphasized the importance of non-drug treatments (education, psychological, exercise, diet, etc) while the research being done over the same time period mainly involved development of drugs, vaccines and biologicals. To perform these sorts of analysis, there are alternative ways of classifying projects or interventions, for example the classification proposed by NordForsk’s (2017), which reclassifies the subcategories proposed in the database Web of Science (WoS) into 16 broad categories of research types (e.g biomedicine and molecular biosciences, clinical medicine, health sciences or social sciences). The overall aim of this Deliverable 4.2 is to explore if InSPIRES Science Shop projects respond to unmet needs, by analysing if the InSPIRES Science Shops demand-driven participatory priorities are among the priorities addressed in the research evidence published in reference papers. In concrete, we analyse if there is a mismatch among the InSPIRES priorities and both the research types and the social demands addressed in reference papers. Methods In order to compare if InSPIRES projects were addressing unmet research types or disciplines, a bibliometric mapping of relevant publications in WoS was performed. Latter, the publications were classified according to the NordForsk’s (2017) broad categories to identify its research type/discipline. At the same time, InSPIRES Science Shop projects were characterized and grouped based on the same NordFork’s categories, and a comparison with the WoS publications was conducted. For the purpose of exploring if InSPIRES projects were addressing unmet social demands, a bibliometric analysis was conducted to define the proportion of the publications that specific social demands (HIV-related stigma, Diet and Chagas and Leprosy post-exposure prophylaxis) represented within the total number of publications of its topic. Results Marked differences were found between the proportions of different research types of the projects conducted by InSPIRES and publications in WoS. While InSPIRES projects mainly focused in social sciences or health sciences (which cover subject categories such as nursing, nutrition or sport sciences), evidence published in WoS was more about biomedicine and molecular biosciences or clinical medicine. Moreover, results suggest that the analysed social demands addressed through InSPIRES projects are unmet social demands as they represent low percentage of publications. For example, ‘Diet and Chagas’ and ‘Leprosy post-exposure prophylaxis’ represent less than 1% of the global publications in Chagas and Leprosy. Discussion and Conclusion The importance that Science Shops have in addressing socially relevant questions is undeniable. This study gives the first evidences on the important role that Science Shops play and their potentiality to address unmet glocal challenges by shaping participatory research agendas. Therefore, Science Shops should be key intermediary structures to shape local, national and international research policies responding to international common needs and, therefore, it is important to put efforts in ensuring their sustainability.
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1. INTRODUCTION
1.1. Historical background and role of Science Shops in responding to social needs Science Shops are commonly defined to provide “independent, participatory research support in response to concerns experienced by civil society” (Gnaiger & Martin, 2001; Living Knowledge, n.d. a) in other words, they aim to give response to social demands through participatory research. They are grounded on the idea that there is a need for intermediate participatory structures bridging function between science and society. The Science Shop model emerged in the Netherlands in the 1970s and, since then, the concept has spread through Europe and beyond. In fact, we can identify four waves in the development and establishment of Science Shops (Fischer, Leydesdorff & Schophaus, 2004). During these “waves” the concept has evolved and diversified, but it has always had the same end goal. The first wave was initiated in the Netherlands following students' movement and was accompanied by a favourable political context. It had the support of the research ministry, who endorsed what they called 'the democratisation of science' (Fischer, Leydesdorff & Schophaus, 2004). That led to the institutionalisation of Dutch Science Shop structures in the country, mainly in universities, which were conceived to have an important role in the resolution of social and environmental problems. Science Shops in universities started to partnership with civil society organisations (CSOs) were students, supervised by senior researchers, undertook research projects free of charge upon CSOs requests. By the end of 1970s almost all Dutch Universities had Science Shops (Fischer, Leydesdorff & Schophaus, 2004; DeBok & Steinhaus, 2008). A second wave started in the 1980s, when the Science Shop movement spread and inspired other European countries such as Germany, France, Denmark and Belgium. At that time, the establishment of those Science Shops was enhanced by the environmental movement, which motivated collaborations with emerging university departments in environmental sciences. In the 1990s the Science Shops concept gained reputation, driven by the ICT revolution, which promoted the swift towards a knowledge-based economy with emerging debates around the active role that society should have in science, moving away from the industrial economy, were society was just a receiver of scientific knowledge. In this scenario, the European Commission (EC) funded several projects on Science Shops, and the movement also spread to Austria and United Kingdom, initiating a third wave. Finally, although since the 1990 there has been a decline in the number of Science Shops in the founding countries (Fischer, Leydesdorff & Schophaus, 2004), in the second half of the 1990s, a fourth wave emerged in countries of Eastern and Middle Europe (Fischer, Leydesdorff & Schophaus, 2004) and other countries outside Europe such as South Africa (Mulder, Auf der Heyde, Goffer & Teodosiu, 2001). In the last two decades, the emergence of Science Shops has continued with new initiatives around the world, in countries such as Italy, Hungary, Wales, China, Ireland, Portugal, Spain, Germany, Lithuania and UK (DeBok & Steinhaus, 2008; Living Knowledge, n.d b) and Science Shops have become again a priority in some science policy agendas. For example, the EC has funded projects to promote and innovate in the field of Science Shops, such as SCIPAS (1999- 2001), ISSNET (2003-2005), TRAMS (2005-2008), PERARES (2010-2014), EnRRICH (2015-2017) or more recently SciShops (2017-2020) and InSPIRES (2017-2021).
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All these initiatives have contributed to create a more heterogenous international community of Science Shops that differ in their goals, how they organise, in which context and fields they work or how they operate (DeBok & Steinhaus, 2008). As a result, nowadays, some Science Shops are not limited to research and include otheractivities such as communication, mediation, advocacy, moderation, consultancy, evaluation, or development and implementation of innovation-oriented solutions (Urias et al., 2020). Although most of the Science Shops are based in universities, new Science Shop initiatives can be found in other organizations such as hospitals, libraries, science centres, museums or innovation service and technology transfer companies (Gresle & Balazs, 2018). Moreover, participation of students is not essential in all Science Shops that may accept requests from larger CSOs and commercial companies, a demand that would probably not have been considered in earlier Science Shop models (Gresle, Balazs, & Pinazo, 2018). Some of the innovative approaches are influenced by different social trends and science policies that promote more open and inclusive processes. For instance, the EC has been promoting Responsible Research and Innovation (RRI), which advocates for certain participatory criteria and enables early participation in the research cycle. Among other requirements, it promotes that diversity of stakeholders participate in defining the research demand and that they should participate more actively during the different phases of the research process (Kupper, Klassen, Rijnen, Vermeulen & Broerse, 2015). Therefore, “there is not one dominant organisational structure defining a Science Shop”” but they all maintain their initial goal to respond to social demands with a bottom-up approach (Living Knowledge, n.d a), which usually facilitates that the focus is given to unmet needs. Although the important role of Science Shops in responding to social demands is clear, there is a need for further evidence on the contributions of Science Shops to respond to unmet needs. In this Deliverable 4.2 we aim to demonstrate that InSPIRES Science Shops have mainly focused its research projects in unmet needs in the different territories. Therefore, this Deliverable 4.2 is focused in the social demand identification phase, which happens at an early stage of the projects. This phase can take multiple forms depending on the type of challenge, the context and the characteristics of the process:
Challenge and topics: Science Shops can address research demands within different challenges related with different topics, such as social, health, environment, art and culture, law… (DeBok & Steinhaus, 2008) Context: Science Shops can perform in different contexts, such as different sectors and organizations at local level, in different countries… Characteristics of the process: Stakeholders involved: In most of the cases, research questions come from concerns expressed by CSOs, but those may also be introduced with more diversity of stakeholders such as policy makers, education community, business and industry, etc. The degree of involvement of different stakeholders should vary according to the type of concern, problem or question expressed (Urias et al., 2020). Participation and methodologies: The demand can be either requested directly via a stakeholder, or can be derived from participatory research agenda setting processes or public engagement activities such as Science Café’s, among other initiatives (Urias et al., 2020). Moreover, the degree of participation of stakeholders is variable and, according to the Ladder of Citizen Participation proposed by Arnstein (1969), it can range from manipulation to citizen control.
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Based on the challenge and topic, the context and the characteristics of the process, Science Shops define research demands that may require the use of different research types (disciplines), for instance, social sciences, natural sciences, humanities or engineering (DeBok & Steinhaus, 2008). Sometimes the social demand is an unmet need, but in other occasions the demand is being addressed but not with certain research types, which are then also unmet needs. The overall aim of this Deliverable 4.2 is to explore if InSPIRES Science Shop projects respond to unmet needs by analysing if the InSPIRES Science Shops demand-driven participatory priorities identified within 2017-2020 are not among the priorities addressed in the research evidence published in reference papers during the same time period. To achieve this aim, in the Deliverable we address two secondary aims:
To explore if InSPIRES Science Shops research projects are responding to social demands through unmet research types by comparting the research types addressed in the Inspires projects with those addressed in the research evidence published in reference papers To explore if InSPIRES Science Shops research projects are responding to unmet social demands by comparing Inspires social demands with the priorities addressed in the research evidence published in reference papers
2. CONCEPTUAL BACKGROUND
There is few evidence on whether available published research and research preferences of society are aligned. In other words, if there is a mismatch or discrepancy between the research choices made by researchers and the priorities of society. Steward and Oliver (2008) state that despite policy support to involve patients and clinicians in identifying research priorities, this rarely translates into influencing research. Therefore, there is still a mismatch in the research agenda with a lack of representation of consumer needs which might be attributed to factors such as funding bias, vested researchers’ interests, the predominance of some professions in research (e.g towards medical and surgical disciplines), or the lack of consumer involvement (Tallon, Chard & Dieppe, 2000). The agenda bias in research can lead to worrying consequences. For instance, in the health area, ineffective treatments may continue to be prescribed and used due to lack of evidence, but at the same time effective treatments may not be adopted due to the absence of evidence. Concurrently, some treatments can be limited only to those interventions for which evidence exists, with the potential biases that the selection of interventions may imply. Moreover, treatments that are inappropriate and unsatisfactory from the patients’ point of view might be promoted, leading to a lack of adherence (Tallon, Chard & Dieppe, 2000). One of the publications that allows us to improve our understanding on the existence of an agenda bias in research, is the investigation conducted by Crowe, Fenton, Hall, Cowan and Chamlers (2015) who compared the research priorities addressed in registered trials with the research priorities identified by patients and clinicians over the same time period (2013-2012). The authors identified three types of interventions: (1) Drugs, vaccines and biologicals; (2) Radiotherapy, surgery and perioperative, devices, and diagnostic; (3) Education and training, service delivery, psychological therapy, physical therapies, exercise, complementary therapies, social care, mixed or complex, diet, other.
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Results revealed that priorities identified by patients and clinicians emphasized the importance of non-drug treatments compared to the research actually being conducted over the same time period, which mainly involved development of drugs, vaccines and biologicals. See in Figure 1 (Crowe, Fenton, Hall, Cowan & Chamlers, 2015) the results of the research, in which it can be observed that drugs account for 18.2% of the priorities for patients and clinicians, clinical solutions account for a 23% and education and similar solutions for a 58.7%. On the other hand, in registered commercial trials, drugs account for 86.3% of the treatments mentioned, while clinical solutions are a 11.1% and education and related solutions just a 2.6%.
Figure 1. Interventions mentioned in commercial trials, non-commercial trials and research priorities identified by James Lind Alliance Priority Setting Partnerships (patients and clinicians’ priorities), 2003-2012. From: Crowe, S., Fenton, M., Hall, M., Cowan K., & Chamlers, I. (2015). Patients’, clinicians’ and the research communities’ priorities for
treatment research: there is an important mismatch. Research Involvement and Engagement, 1, 2 Prior investigations also show similar results. Tallon, Chard and Dieppe in 2000, analysing interventions for osteoarthritis of the knee, concluded that research consumers (rheumatologists, general practitioners, physiotherapists and patients) were more interested in non-drug treatments (e.g evaluation of the effects of physiotherapy and surgery, and education and advice to manage the chronic condition as first choice) than in drug-treatments, which concentred most of the studies and research publications. To perform these sorts of analysis, there are alternative ways of classifying projects or interventions that facilitate the task, for example the classification proposed by NordForsk’s (2017). It is based on the classification of the database Web of Science (WoS) where there are 259 subject categories, which are being used by all journals which are classified within one or more of these. With the aim of facilitating the classification of projects, NordForsk’s (2017) proposes a reclassification of these fields into 16 broad categories, such as ‘biomedicine and molecular biosciences’ (which includes subject categories such as pharmacology and pharmacy, virology or immunology), ‘clinical medicine’ (which includes subject categories such as surgery, endocrinology, hematology or orthopedics), ‘health sciences’ (which includes subject categories such as nursing, nutrition and dietetics or sport sciences) or ‘social sciences’ (which includes subject categories such as sociology, education or communication), among others (See Appendix A). The WoS subject categories are classified in the main NordForsk’S broad categories based on a network analysis approach, i.e. the different subject categories publications within one broad category correspond to publications that most cite and are cited between them. For instances, within the broad category of “Biomedicine & Molecular Biosciences” we will find publications
7 on the subject category of “virology” that will cite and be cited by the other subject categories in this broad category. However, when the publications are not cited and cite others, then they fall into different broad categories. For example two papers on HIV belonging to the one of the subject categories Pharmacology and Pharmacy or Health Policy & Services will, by classification rules of NordForsk, will be considered as papers within the broad categories of ‘biomedicine and molecular Biosciences’ and ‘health Sciences’ respectively.
3. METHODOLOGY
3.1. Constitution of the research team The research for this Deliverable 4.2 was conducted by the Living Lab for Health at IrsiCaixa on behalf of the EC funded project InSPIRES, in coordination with the Nordic Institute for studies in Innovation, Education and Research (NIFU), who conducted the bibliometric mapping for the research type analysis and provided advice and assessment during the process. 3.2. Data collection For all the Science Shop projects conducted within the InSPIRES period (2017-2021), including projects developed by Consortium partners (ISGlobal, ESSRG, IrsiCaixa, UNIFI, IPT, CEADES, VU, UdL) and the six InSPIRES Open Call winners, information regarding the items shown in Table 1 was collected. Based on this data, a sample description was made which was also the basis for the subsequent data selection process for the analysis.
Table 1. Information collected for each Science Shop projects conducted within the InSPIRES period (2017-2021)
Information requested 1 Name of the project
Partner from the InsPIRES consortium or the Open Call 2 winners who leaded the project 3 Country where the partner is located
4 Country where the project was implemented 5 Period of implementation Characteristics of the process to identify the social demand
6 (participatory methodologies, number and variety of stakeholders involved, degree of participation)1 7 Topic (broad topic and specific topic)2
8 Specific research demand (aim of the research) 8 Research type or discipline 3
1 Information regarding the degree of participation to identify the demand was collected based on the “ladder of participation” categories defined by Arnstein (1969), which are manipulation, therapy, informing, consultation, placation, partnership, delegated power and citizen control. 2 Information regarding the broad topic was limited to the options “health”, “environment”, “both” or “other”, as health and environment are the principal focus of the InSPIRES project. 3 Information was requested based on the 16 broad categories proposed by NordForsk’s (2017) 8
3.3. Inclusion criteria and data selection In order to conduct the analysis, InSPIRES Science Shop projects were selected based on the following inclusion criteria: (1) Projects focused on the broad topic health, environment or both (since health and environment are the principal focus of the InSPIRES project) (2) Research demand identified within the period January 2017-December 2020 Based on this inclusion criteria, out of 117 projects a total of 84 projects were selected for the analysis and 33 projects were excluded (Figure 2a). This data was used for analysing the research types within the broad topics “Health”, “Health and Environement” and “Environment”, as described in section 3.4. Moreover, some specific topics were selected for further analysis by research type. This selection was made to validate the results obtained with the previous data set with a more robuts sample that ensures a more concise bibliometric analysis . In order to select the specific topics, the following criteria were defined: (1) There had to be 4 projects or more on the same specific topic (2) Specific topics with broad definitions were excluded, due to the difficulties that they could entail in a bibliometric analysis. E.g. Mental health is a broad topic, as it includes different pathologies such as anxiety, bipolar disorder, schizophrenia, depression, eating disorders, etc. Based on this inclusion criteria, 19 projects and 3 specific topics were selected for the analysis, and a total of 65 projects and 32 specific topics were excluded (Figure 2b). The final specific topics were HIV/AIDS (10 projects), Chagas (5 projects) and Leprosy (4 projects), all belonging to the broad topic “Health”. See in Appendix B the final selection of projects on these specific topics for the analysis.
Figure 2. Flow chart of the selected and discarded projects and specific topics
Finally, in order to specifically address the secondary aim of exploring whether InSPIRES Science Shops research projects are responding to unmet social demands, for each specific topic (HIV/AIDS, Chagas and Leprosy) (a) project(s) was selected considering the social demand that
9 the project addressed. The projects were selected based on the possibility and feasibility to find keywords that could describe the social demand. See in Appendix C the projects selected and the social demands they address for each specific topic, i.e. HIV-related stigma, diet and Chagas and Leprosy Post-Exposure Prophylaxis.
3.4. Unmet research types analysis To respond to the first secondary aim and explore if InSPIRES Science Shop priorities were responding to social demands through unmet research types or disciplines, a comparison of the research types of Inspires projects with the research types of a bibliometric analysis of publications in the database WoS was conducted. First of all, a comparison of those research types within the broad topics of ‘health’, ‘environment’ or both’ was conducted at global level. Next, a second analysis was conducted in order to compare the research types within the specific topics of HIV/AIDS, Chagas and Leprosy at global level and for selected countries (based on the countries were the InSPIRES projects were coordinated or implemented) (see Appendix B).
3.4.1. Bibliometric analysis in Web of Science A bibliometric mapping was conducted to document all publications, about research related to (1) Health and/or Environment and (2) HIV/AIDS, Chagas and Leprosy in the period 2017-2020. The mapping of relevant publications was carried out using Web of Science (WoS), where article titles, abstracts and keywords were searched for search terms specified in Table 2. The search terms included were considered to be unique for a specific disease, e.g. the drug names Benznidazole and Nifurtimox when mapping papers about Chagas, as they are the main treatments for this disease. The analysis for Health and/or environment was only carried out at the global level, while, for the specific topics it was also carried out for selected countries . For HIV/AIDS: Spain, Netherlands, Tunisia, Bolivia, Nigeria and Ecuador. For Chagas: Spain and Bolivia. For Leprosy: Netherlands, Nepal and Ethiopia. The second step of the mapping was to classify the publications according to WoS 259 subject categories, and the NordForsk’s (2017) reclassification of these into the 16 broad categories.
Table 2. Search terms used in Web of Science for each of the broad and specific topics analysis Topic Search terms Health Health, medicine, medical Environment Environment Health and environment Environment & health, environment & medicine, environment & medical HIV/AIDS HIV, AIDS, Antiretroviral therapy, Nucleoside analogue reverse transcriptase inhibitors, Tenofovir alafenamide, Emtricitabine, Emtriva, Vemlidy, Lamivudine, Tenofovir alafenamide, Abacavir, Ziagen, Integrase inhibitors, Bictegravir, Dolutegravir, Tivicay, Raltegravir, Isentress Chagas Chagas, American trypanosomiasis, Benznidazole, Nifurtimox, Trypanosoma cruzi Leprosy Leprosy, Hansen’s disease, Dapsone, Diaminodiphenyl sulfone, Rifampicin, Rifampin, Clofazimine, Lamprene, Mycobacterium leprae, Mycobacterium lepromatosis
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3.4.2. InSPIRES Project’s analysis and comparison of the research types The analysis was centred on the research type of each selected InSPIRES project based on the NordForsk’s (2017) 16 broad categories, and was conducted in two parts (1) Broad topics: Health and/or Environment and (2) Specific topics: HIV/AIDS, Chagas and Leprosy. The analysis consisted on grouping the projects for the broad and specific topic they belonged to, and latter analysing the proportion of each research types. As in the bibliometric analysis, the country of coordination or implementation of the projects was also considered. Next, a comparison of the total publications and percentages of the different research types between WoS publications and InSPIRES projects was conducted.
3.5. Unmet social demands analysis A bibliometric analysis was conducted to define the proportion of the publications that each specific social demand selected (See Appendix C) represented within the total number of publications of its specific topic (e.g proportion of HIV-related stigma publications within HIV/AIDS publications), during the period 2017-2020. The mapping of relevant publications was carried out using WoS, where article titles, abstracts and keywords were searched for search terms specified in Table 3. For the specific topics, the same keywords than for the research type analysis were used. For the specific social demands the same keywords as for the specific topics were used adding the condition to also look for specific keywords of the specific research demand (e.g “stigma” and “discrimination” in the case of HIV-related stigma). The search was conducted at the global level and then for selected countries (based on the countries were the projects for the selected social demands were implemented or the InSPIRES partner was located coordinating the project). For HIV/AIDS-related stigma: Spain, Bolivia and Ecuador. For Chagas: Bolivia. For Leprosy: Netherlands, Nepal.
Table 3. Search terms used to analyze the social demands representation in Web of Science
Topic Search terms HIV/AIDS HIV, AIDS, Antiretroviral therapy, Nucleoside analogue reverse transcriptase inhibitors, Tenofovir alafenamide, Emtricitabine, Emtriva, Vemlidy, Lamivudine, Tenofovir alafenamide, Abacavir, Ziagen, Integrase inhibitors, Bictegravir, Dolutegravir, Tivicay, Raltegravir, Isentress HIV-related (Stigma, Discrimination) & (HIV, AIDS, Antiretroviral therapy, Nucleoside analogue stigma reverse transcriptase inhibitors, Tenofovir alafenamide, Emtricitabine, Emtriva, Vemlidy, Lamivudine, Tenofovir alafenamide, Abacavir, Ziagen, Integrase inhibitors, Bictegravir, Dolutegravir, Tivicay, Raltegravir, Isentress) Chagas Chagas, American trypanosomiasis, Benznidazole, Nifurtimox, Trypanosoma cruzi Diet and Chagas (Diet, Nutrition) & (Chagas, American trypanosomiasis, Benznidazole, Nifurtimox, patients Trypanosoma cruzi) Leprosy Leprosy, Hansen’s disease, Dapsone, Diaminodiphenyl sulfone, Rifampicin, Rifampin, Clofazimine, Lamprene, Mycobacterium leprae, Mycobacterium lepromatosis Leprosy Post- (post-exposure prophylaxis, PEP) & (Leprosy, Hansen’s disease, Dapsone, Exposure Diaminodiphenyl sulfone, Rifampicin, Rifampin, Clofazimine, Lamprene, Prophylaxis Mycobacterium leprae, Mycobacterium lepromatosis)
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4. RESULTS
4.1. InSPIRES projects sample description 4.1.1. Total number of projects implemented The total of 117 projects responding to social needs that were implemented during the InSPIRES project lifespan (2017-2021) can be found in Table 4, distributed by project partner and Open Call recipients. Eight of them were Transdisciplinary and Transnational (TT) projects, meaning that they involved more than one partner. Among these TT projects, three were “TT-mutual learning projects”, in which involved partners collaborated to exchange knowhow and promote mutual learning on the methodologies or the challenge addressed, among other aspects. These TT were based on projects that were already implemented by the partners and, consequently, they appear in Table 4 within the projects implemented by each partner (1: IrsiCaixa-VU; 2: ISGlobal-CEADES; 3: ISGlobal-ESSRG). On the other hand, the other TT projects were “TT-research projects”, in which two partners collaborated to initiate a new project jointly during all the research phases. A total of 5 TT- research projects were implemented, 2 by InSPIRES parners (1: UNIFI-IPT, 2: ISGlobal-IPT) and 3 by Open Call awarded entities. Table 4. Number of projects implemented by each partner and open call awarded entities. * Projects include TT-mutual learning projects
Partner Nº of projects ISGlobal 5 *
ESSRG 11 * IrsiCaixa 9 * UNIFI 7 IPT 8 CEADES 6 * VU 30 * UDL 33
Open Call awarded entities 6 (includes 3 TT-research) TT-research by project partners 2 (UNIFI-IPT, ISGlobal-IPT) TOTAL 117
4.1.2. Countries Partner’s and Open Call awarded entities were located in 13 different countries, and the projects were implemented in 30 different countries. Figures 3 and 4 show the world distribution, were the wide range of countries implicated in responding to social demands can be appreciated.
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Figure 3. Countries where the Science Shop partners and Figure 4. Countries where the Science Shop projects were Open Call recipients were located: Benin, Bolivia, Ecuador, implemented: Benin, Bolivia, Burkina Faso, Cameroon, France, Greece, Hungary, Italy, Netherlands, Romania, Canada, Ecuador, Ethiopia, France, Georgia, Guinea, Haiti, Spain, Tunisia, Turkey, and Uganda. Hungary, Indonesia, Italy, Ivory Coast, Kenya, Kyrgyzstan, Namibia, Nepal, Netherlands, Niger, Nigeria, Romania, Senegal, Spain, Switzerland, Tunisia, Turkey, Uganda, and United Kingdom. Three projects implemented in world regions: Europe, Africa, International.
4.1.3. Characteristics of the process to identify social demands Participatory methodologies to identify the demand
A total of 10 different methodologies were used to identify the social demands. The methodologies were: conversations/meetings, interviews, workshops with group discussions, mental mapping and other methodologies, questionnaires/surveys, Delphi method, observations, open call, science cafes, engagement forums and similar methodologies, participatory research agenda setting processes with methodologies such as the dialogue model or the Delphi method, analysis of publications in media, and literature review. The most applied methodologies to identify social demands were conversations/meetings (31.3%) in first place, followed by open call (18.7%) and interviews (18.1%), and in lower percentages workshops with group discussions, mental mapping and other methodologies (12.1%), and questionnaires/surveys (8.8%) (See Figure 5).
Figure 5. Methodologies used to identify social demands (%)
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Figure 6 shows the distribution of methodologies used per partner. ISGlobal, UNIFI and the TT- research by project partners predominantly used conversations/meetings (37.5%, 71.4% and 50% respectively), ESSRG and VU interviews (40% and 64.9% respectively), CEADES and the Open Call recipients worskshops with group discussions, mental mapping and other methodologies (100% and 33.33% respectively), and IrsiCaixa mostly used participatory research agenda setting processes with methodologies such as the dialogue model (55.6%). UDL used both conversations/meetings and open calls in the same proportion (50%), as well as IPT with conversations/meetings and questionnaires/surveys. It must be noted that in many cases, in order to gather a research demand, Science Shops structures used a combination of the mentioned methodologies, although in this analysis they are shown separately. Furthermore, although categorizing the methodologies to identify the demand, some partners explicitly stated that it is not a linear process and that the identification of the demand phase may not only happen at the beginning. For example, the monitoring and evaluation phases are always forms to collect new needs and demands to refine or start projects.
ISGlobal ESSRG Conversations/meetings IrsiCaixa Interviews UNIFI Workshops with group discussions. mental mapping. etc CEADES Questionnaires/surveys IPT Observations VU Open Call UDL Science cafès. engagement forums. etc TT-research by project partners Participatory research agenda setting Open Call Analysis of publications in media 0 20 40 60 80 100 Literature review Percentage (%)
Figure 6. Methodologies used to identify social demands (%) by partner Degree of participation Consultation (45.4%) and partnership (34.5%) were the most frequent typologies of participation used when identifying the research demand. Therapy, one of the lowest levels of the Arnstein (1969) ladder of participation, was only used in 4.2% of the projects (Figure 7).
Figure 7. Degree of participation of stakeholders during the demand identification (%)
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On average, all partners have used forms of participation that range from Consultation (4) to Citizen Power (8)), none of them being within degrees of participation lower than consultation (Figure 8).
TOTAL 5.2
ISGlobal 5
ESSRG 5.5 IrsiCaixa 5.6
UNIFI 5.1
CEADES 4 Mean IPT 6
VU 4.1
UDL 4.7 TT-research by project partners 6 Open Call* 6
1 2 3 4 5 6 7 8
Título del eje
Figure 8. Degree of participation of stakeholders during the demand identification (%) by partner.
Diversity of stakeholders
A total number of 6035 stakeholders participated during demand identification processes within the InSPIRES project. The most common stakeholder involved were non-organised citizens, accounting for 46% of the total number of stakeholders, followed by students (33%), representatives of civil society organisations (CSOs) (6.6%), researchers and innovators (4.1%), representatives of the education community (2.9%), health professionals (2.7%) and policy makers (1.5%) (Figure 9).
Figure 9. Typologies of stakeholders participating during the demand identification processes (%)
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Regarding the distribution of stakeholders per partner, ISGlobal and CEADES worked predominantly with representatives of CSOs (52.3% and 53.5%, respectively), ESSRG, VU, UDL and Open Call recipients with non-organised citizens (51.2%, 35.7%, 90.7% and 34.88% respectively), IPT and the TT-research projects with researchers and innovators (21.2% and 33.3% respectively), and finally IrsiCaixa and UNIFI with students (97.77% and 68.9% respectively). However, they all worked with diversity of stakeholders, as can be seen in Figure 10.
Civil Society ISGlobal (N=172) Oragnisation Non-organised citizens ESSRG (N=688) Policy makers IrsiCaixa (N=1658) Researchers and UNIFI (N=296) innovators Bussiness and industry CEADES (N=43) Education community IPT (N=52) Communication experts VU (N=515) and media Health professionals UDL (N=2262) Social workers
TT-research by project partners… Students
Open Call (N=301) Funding agencies
0 20 40 60 80 100 Others Percentage (%)
Figure 10. Typologies of stakeholders participating during the demand identification processes (%) by partner
4.1.4. Challenges and topics Broad Topic
Most of the social demands focussed on health topics (47.9%), while those focused on environment represented a 12%, and those tackling both topics, health and environment, represented a 12.8%. 27.4% of the projects did not focus neither on health or environment (Figure 11). However, this last projects were often related with the former topics and were important to solve health and environmental challenges, such as urban planning or housing. In other occasions, they were related with Science Shop processes, such as aspects related with methodologies as citizen science or science cafés.
Figure 11. Broad topic of the social Figure 12. Broad topic of the social demands identified (%) demands identified (%) by partner 16
“Health” has been the most common broad topic for the demands of the partners ISGlobal (100%), IrsiCaixa (88,9%), CEADES (100%), IPT (87,5%) and VU (76,7%), “Environment” for the Open Call awarded entities (83,3%), “Both” for ESSRG (81,8%), and “other” for UNIFI (42,9%) and UDL (60,6%). 50% of the TT-reseach projects by parners have been on “Health” and the other 50% on “Other” topics (Figure 12). Specific topics
A total number of 53 different specific topics were identified within the social demands. The specific topics with more number of projects were HIV/AIDS (10), Green Care (8), Food (7), and Urban Planning (7). See in Appendix D the list of specific topics and the number of projects for each topic.
4.1.5. Research types The most used research type to address the research demands were social sciences (44.6%) in first place, followed by health sciences in second place (33.1%). With a much lower presence there have been research demands addressed through psychology (7%), and with percentages of less than 5% disciplines such as clinical medicine (3.2%) and biomedicine and molecular biosciences (1.9%) (Table 5).
Table 5. Distribution of InSPIRES projects (%) across research types
Agriculture, fisheries, forestry 1.3 Biology 1.3 Biomedicine and molecular biosciences 1.9 Business studies and economics 0.6 Chemistry 0.6 Clinical medicine 3.2 Computer and information sciences 0 Engineering 0.6 Geosciences 1.3 Health sciences 33.1 Humanities 4.5 Materials science 0 Mathematics and statistics 0 Physics 0 Psychology 7 Social sciences 44.6
4.2. Results of the analysis of the unmet research types In this section we present the results of the analysis of research types in tables distributed by broad topics and specific topics. In the tables there are two special categories at the bottom. First ‘unclassified’, which means that during the bibliometric analysis it was not possible to assign these papers to any scientific fields. Second, the category ‘multidisciplinary’, which covers a much larger share of the papers. The origin of these papers are multidisciplinary journals like Nature, Science, Proceedings of the National Academy of Sciences and PLoS One. Most of such journals mainly publish research within medicine and natural sciences, whereas PLoS One is a
17 truly multidisciplinary journal. Within the framework of this bibliometric mapping it was not possible to manually reclassify these papers according to their research type. Yet, their percentage of the total volume is very low, and do not affect the overall results. 4.2.1. Broad Topic: Health and/or environment In this section we present the results in percentages of papers indexed in Web Of Science and within the InSPIRES projects, distributed by broad topic and 16 broad categories of research types (Table 6).
Table 6. Distribution of Health and/or Environment Web of Science publications and Health and/or Environment InSPIRES projects (%) across research types, world
Health and Health Environment environment WoS InSPIRES WoS InSPIRES WoS InSPIRES Agriculture, fisheries, forestry 3.8 0 5.4 0 4.6 11.1 Biology 1.6 2.6 6 0 3.1 0 Biomedicine and molecular 16.7 3.8 10.5 0 13.8 0 biosciences Business studies and economics 0.9 0 2.6 0 1.2 0 Chemistry 3.8 0 7.9 5.3 6.1 0 Clinical medicine 30.8 6.4 5.2 0 13.2 0 Computer and information 1.4 0 3.3 0 1.7 0 sciences Engineering 4.3 0 15.8 0 9.2 0 Geosciences 3.2 0 13.6 10.5 12.4 0 Health sciences 17.4 53.8 3.8 15.8 15.5 5.6 Humanities 1 1.3 1.6 5.3 0.8 0 Materials science 2.4 0 5.4 0 4.1 0 Mathematics and statistics 0.3 0 0.6 0 0.3 0 Physics 1.8 0 5.1 0 2.3 0 Psychology 2.8 3.8 1.4 0 1.9 16.7 Social sciences 5 28.2 9 63.2 7 66.7 Multidisciplinary 2.8 2.8 2.8 Unclassified Total number 1,174,282 78 780,733 19 113,529 18
In regards to the “health” area, WoS publications are remarkably positioned into clinical medicine (30.8%), followed by health sciences (17.4%) and biomedicine and molecular biosciences (16.7%). All the other research types have a much lower presence with percentages of 5% or less, such as social sciences. On the other hand, InSPIRES projects are mostly focused on health sciences (53.8%) and social Sciences (28.2%), the latter being a discipline not predominant in WoS. Within InSPIRES projects Clinical medicine and biomedicine and molecular biosciences are in much low percentages, 6.4% and 3.8% respectively. “Environment” and “Health and environment” are the topics in the mapping with the broadest involvement of scientific fields/research types. In the field of environment, engineering (15.8%) and geosciences (13.6%) are the most predominant research types of WoS publications, together with biomedicine/molecular biosciences (10.5%). Social sciences are in fourth place with a percentage of 9%, and the
18 prevalence of clinical medicine (5.2%) and health sciences publications is much lower (3.8%). By contrast, the InSPIRES projects focused mainly on social sciences (63.2%) and health sciences (15.8%), followed by geosciences (10.5%). In the field of Health and Environment, health sciences are the most represented field of all (15.5%), together with clinical medicine and biomedicine/molecular biosciences (both around 13%). Social sciences represent a 7%. Due to the many different underlying concepts of ‘environment’, there are also quite many papers from agriculture /fisheries/forestry (4.6%), biology (3.1%) and geosciences (12.4%). The overall picture is nevertheless that the search terms primarily have captured studies related to human health in an environmental setting. Most of the InSPIRES projects on health and environment were on social sciences (66.7%), followed by psychology (16.7%). Health sciences was a research type used only in 5.6% of the projects, and there were no projects in clinical medicine. Agriculture/fisheries/forestry appeared in 11.1% of the projects.
4.2.2. Specific topic: HIV/AIDS, Chagas and Leprosy 1. HIV/AIDS
In this section we present the results in percentages of papers indexed in Web Of Science and within the InSPIRES projects focused on HIV/AIDS, distributed by world localization and 16 broad categories of research types (NordForsk broad categories) (Table 7). Based on global WoS publications foremost research on HIV/AIDS is concentrated in clinical medicine (31.6%) and biomedicine and molecular biosciences (25.6%), followed by health sciences (16.5%). Social sciences (4%) and psychology (3.3%) have a low presence although relevant; as they are almost non-existing in other demands such as Chagas and Leprosy research (see Sections below). All other disciplines are also represented but with very low percentages. Regarding, the total InSPIRES projects focused on HIV/AIDS, most of them belong to health sciences (47%) but also social sciences (40%). With lower presence, there are projects on clinical medicine (13%) but none on biomedicine/molecular biosciences. Country distribution of WoS publications follow a similar pattern to global papers. In all countries, clinical medicine is the main scientific field (except in Spain where number of biomedical studies are slightly higher), together with biomedicine and molecular biosciences (except in Ecuador). It is noted that non-Western countries are substantially lower present in biomedical studies compared to the Netherlands or Spain (except for Bolivia, were results are only based on 7 papers). Health sciences publications on HIV/AIDS differ a bit between countries: from 7.4%, 8.8% and 12,6% in Tunisia, Spain and Netherlands respectively, to 17,5% and 23% in Ecuador and Nigeria. No publications were found in Bolivia but it might not be relevant as results are only based on 7 papers. Again, the social sciences are poorly represented. If we combine psychology and social sciences, papers form these fields constitute 22.9% of the papers from Ecuador, but in the other countries the numbers are very low: 4.9% in Spain, 5.3% in the Netherlands, 5.6% in Tunisia and 6.4% in Nigeria. InSPIRES projects by country are mainly distributed between social sciences and health sciences, except from Bolivia, in which they have a relevant percentage of projects on clinical medicine (40%) instead of social sciences, and Ecuador, that all their projects were focused on health sciences.
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Table 7. Distribution of HIV/AIDS Web of Science publications and HIV/AIDS InSPIRES projects (%) across research types, world and selected countries World Spain Bolivia Ecuador Netherlands Nigeria Tunisia InSPIRES InSPIRES WoS InSPIRES WoS InSPIRES WoS InSPIRES WoS InSPIRES WoS WoS InSPIRES WoS InSPIRES partner project Agriculture, fisheries, 1 0 1 0 0 0 0 0 0.6 0 0 0.8 0 3.7 0 forestry Biology 2 0 1.4 0 11.1 0 7 0 1.4 0 0 0.9 0 1.9 0 Biomedicine and 25.6 0 34.1 0 33.3 0 8.8 0 39.5 0 0 20.2 0 18.5 0 molecular biosciences Business studies and 0.5 0 0.6 0 0 0 0 0 0.6 0 0 0.4 0 7.4 0 economics Chemistry 2.4 0 2.4 0 0 0 3.5 0 0.8 0 0 0.6 0 1.9 0 Clinical medicine 31.6 13 33.8 0 33.3 40 31.6 0 39.9 0 0 37.8 0 35.2 0 Computer and 1 0 0.8 0 0 0 1.8 0 0.2 0 0 0.4 0 0 0 information sciences Engineering 2.4 0 1.7 0 0 0 0 0 1.2 0 0 0.7 0 3.7 0 Geosciences 1 0 1.4 0 11.1 0 3.5 0 0.9 0 0 0.4 0 0 0 Health sciences 16.5 47 8.8 33 0 60 17.5 100 12.6 50 0 23 100 7.4 50 Humanities 0.8 0 0.5 0 0 0 0 0 0.5 0 0 0.3 0 1.9 0 Materials science 1.1 0 1.3 0 0 0 0 0 0.3 0 0 0.2 0 0 0 Mathematics and 0.9 0 0.2 0 0 0 1.8 0 0.2 0 0 0.4 0 5.6 0 statistics Physics 1 0 0.7 0 0 0 1.8 0 0.6 0 0 0.4 0 3.7 0 Psychology 3.3 0 1.8 0 0 0 1.8 0 2.8 0 0 2.1 0 1.9 0 Social sciences 4 40 3.1 67 11.1 0 21.1 0 2.5 50 100 4.3 0 3.7 50 Multidisciplinary 4.7 6.3 5.3 7.1 3.7 Unclassified 0.2 0.1 0.1 Total number 63,021 15 2,340 6 7 5 50 1 1,844 2 1 915 1 41 2
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2. Chagas
In this section we present the results in percentages of papers indexed in Web Of Science and within the InSPIRES projects focused on Chagas, distributed by world localization and 16 broad categories of research types (Table 8). At the global level and in Spain, publications on Chagas are foremost biomedical (close to 50%), and around 26-27% of the papers are from clinical medicine. In Bolivia, the publications are more distributed among these two research types, with percentages of 35%. In all cases the presence of studies from the social sciences are practically non-existing, whereas health sciences is a very small field. Within InSPIRES, there are no biomedical projects, and clinical medicine is a minor discipline, while health sciences and social sciences represent important research types, with percentages around 40-50% (table X).
Table 8. Distribution of Chagas Web of Science publications and Chagas InSPIRES projects (%) across research types, world and selected countries
World Spain Bolivia WoS InSPIRES WoS InSPIRES WoS InSPIRES Agriculture, fisheries, 4 0 2.7 0 2.5 0 forestry Biology 4.7 0 1.3 0 3.8 0 Biomedicine and 47.5 0 46.6 0 35.4 0 molecular biosciences Business studies and 0 0 0 0 0 0 economics Chemistry 6.7 0 8.8 0 5.1 0 Clinical medicine 26.1 10 27.1 0 35.4 12.5 Computer and 0.4 0 0.2 0 1.3 0 information sciences Engineering 0.5 0 0.6 0 1.3 0 Geosciences 0.5 0 0.4 0 0 0 Health sciences 4.8 50 6.5 50 6.3 50 Humanities 0.4 0 0 0 0 0 Materials science 0.3 0 0 0 0 0 Mathematics and 0.2 0 0.8 0 1.3 0 statistics Physics 0.2 0 0.2 0 0 0 Psychology 0 0 0 0 0 0 Social sciences 0.4 40 0.4 50 0 37.5 Multidisciplinary 3.3 4.4 7.6 Unclassified Total number 3,610 10 327 2 48 8
3. Leprosy
In this section we present the results in percentages of papers indexed in Web Of Science and within the InSPIRES projects focused on Leprosy, distributed by world localization and 16 broad categories of research types (Table 9).
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Leprosy publications in WoS have many similarities with Chagas papers (table X). First, a lack of studies in social sciences and the low presence of health sciences. Second, an overwhelming dominance of biomedical/molecular biosciences and clinical medicine studies, the latter being in much greater percentages than in Chagas publications. Moreover, while the Netherlands have equal shares of biomedical and clinical studies (both 42 per cent), world papers are much more dominated by being biomedical, with a percentage of 41.1% (the same happens with countries such as the United States with 47.5%-not shown in the table). Furthermore, in Ethiopia and Nepal the shares of clinical studies are close to 50%. This can indicate a global “division of labor” that it is further developed in the discussion section. However, note that both Ethiopia and Nepal are represented by relative high shares of publications from the health sciences. In relation to the InSPIRES projects, all of them focus on health sciences, and there is no representation of biomedical/molecular biosciences or clinical medicine studies. Table 9. Distribution of Leprosy Web of Science publications and Leprosy InSPIRES projects (%) across research types, world and selected countries
Ethiopia Nepal Netherlands World (project (project (partner country) implementation) implementation) WoS InSPIRES WoS InSPIRES WoS InSPIRES WoS InSPIRES Agriculture, fisheries, 2.8 0 0.9 0 1.6 0 0 0 forestry Biology 1.2 0 0.9 0 0 0 0 0 Biomedicine and molecular 41.1 0 42.2 0 29.6 0 37 0 biosciences Business studies 0 0 0 0 0 0 0 0 and economics Chemistry 5.2 0 0.9 0 0 0 0 0 Clinical 34.7 0 42.8 0 45.6 0 49.3 0 medicine Computer and information 0.2 0 0 0 0 0 0 0 sciences Engineering 1.1 0 0.6 0 0 0 0 0 Geosciences 0.8 0 1.1 0 0.8 0 0 0 Health sciences 5.1 100 4.6 100 9.6 100 8.2 100 Humanities 0.8 0 0 0 0 0 0 0 Materials 1.8 0 0.3 0 0 0 0 0 science Mathematics 0.1 0 0 0 0 0 0 0 and statistics Physics 0.7 0 0.3 0 0 0 0 0 Psychology 0 0 0 0 0 0 0 0 Social sciences 0.6 0 0.3 0 0 0 0 0 Multidisciplinary 3.9 5.2 12.8 5.5 Total number 4,968 4 254 4 93 1 47 3
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4.3. Results of the analysis of unmet social demands In this section we present the results of the analysis of the unmet social demands for the specific projects selected on HIV-related stigma, diet and Chagas and Leprosy Post-exposure Prophylaxis. HIV-related stigma global publications represent a 5.58% of the publications on HIV/AIDS. The number is similar in Bolivia and Ecuador (5.08%) whereas in Spain this percentage is reduced to 3.12% (Table 10a). The global publications on diet and Chagas disease only account for a less than 1% of the publications on Chagas. In Bolivia there are no publications on this social demand at all (Table 10b). In reference to Leprosy, publications on Leprosy post-exposure prophylaxis are almost non- existent, with a percentage of 0.32% of the publications on Leprosy, while in Netherlands this percentage increases to 5.78% and in Nepal even more, reaching a percentage above 12% (Table 10c).
Table 10. Distribution of publications by specific topic and social demands, word and selected countries a) Bolivia / Number of publications World Spain Ecuador HIV/AIDS 75,651 2,722 59 HIV-related stigma 4,222 85 3 % HIV-related stigma 5.58% 3.12% 5.08%
b) Number of publications World Bolivia Chagas 4005 52 Diet and Chagas 35 0
% Diet and Chagas 0.87% 0.00%
c) Number of publications World Netherlands Nepal Leprosy 7,474 277 49 Leprosy post-exposure 24 16 6 prophylaxis
% Leprosy post- 0.32% 5.78% 12.24% exposure prophylaxis
5. DISCUSSION
5.1. InSPIRES implication in responding to social demands The InSPIRES projects sample description shows that the Science Shops responded to social demands, in consonance with the main aim and values of Science Shop projects (Gnaiger & Martin, 2001; Living Knowledge, n.d. a) In first place, evidence of the methodologies used to identify the demands has been provided, most of which ensured the participation of stakeholders, for example through: meetings, open calls, interviews, workshops with group discussions, mental mapping and other methodologies,
23 or surveys. Other methodologies used, such as the analysis of publications in the media and literature reviews did not imply the active participation of stakeholders, but they were used in low percentage of cases and were methodologies useful to provide evidence of the need to investigate on certain social demands. It is interesting to note that the most time-consuming methodologies, such as participatory research agenda setting processes or the Delphi method, were used in a low percentage of cases (3.8% and 1.1%, respectively), although they have shown to be more effective than the other methodologies, especially for complex problems (ref Eduardo). Therefore, further research should be carried out to explore the barriers for their implementation. If we look at the methodologies used by each partner, some frequently used the same methodologies but results show that, as a Consortium, a wide variety of methodologies were used, a fact that could be inspiring for mutual learning and future exploration of different methodologies of gathering demands. In second place, is important to note that in most cases the degree of participation of stakeholders when identifying the research demand was high. This is supported by this study results, that show that, based on the Arnstein (1969) ladder of participation, in average all partners used levels of participation equal or higher than consultation (4 out of 8 in the ladder of participation), indicating that a genuine participation has been ensured and legitimized. Low levels of participation were circumstantial and in isolated cases. Finally, the huge number of stakeholders involved (more than 6000) indicate that many people were reached around the globe and that therefore many social concerns have been collected. Moreover, the huge variety of stakeholders involved to identify the demand (non-organised citizens, students, CSOs, researchers and innovators, education community, health professionals, policy makers, social workers, communication experts and media, business and industry, funding agencies, other stakeholders) points out how the InSPIRES partners did not only follow the traditional model of Science Shops, were mainly concerns from CSOs are collected (Gnaiger & Martin, 2001; Living Knowledge, n.d. a; Urias et al, 2020)), which gives more evidence of the versatility and openness of the Science Shop model nowadays.
5.2. InSPIRES implication in responding to unmet research types Regarding the InSPIRES implication in responding to unmet research types, results suggest that there is a tendency within the InSPIRES participatory projects to respond to social demands through research types (such as social sciences or health sciences), that are not among the first preferences of the research evidence published in the Web of Science (which focus more on biomedicine or clinical medicine). Hence, results suggest that there is a mismatch between the preferences expressed by society and those actually being researched and that Science Shops are critical to reverse this mismatch. These findings corroborate the existing evidence published Tallon et al. (2000) and Crowe et al. (2015), who concluded there was an agenda bias in research as patients and clinicians expressed preferences related to non-drug treatments (education, psychology, …) compared to the research being done, that was mainly related to drugs, vaccines and biologicals.
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5.2.1. Health and/or environment Within the health area, results support this idea, as Wos publications are positioned into clinical medicine, health sciences and biomedicine/molecular biosciences, whereas InSPIRES projects are mainly positioned into health sciences and social sciences. Studies about environment and health and environment are special areas and do not exactly follow the same pattern due to its nature. They are the areas truly multidisciplinary and more transdisciplinary given the large number of papers in all scientific fields except mathematics and statistics. Due to this different patterns, differences can be found when comparing the WoS publications with the InSPIRES projects. Within the environmental area, engineering, geosciences and biomedicine/molecular biosciences are the most predominant research types of WoS publications, while InSPIRES projects are mainly focused on social sciences, health sciences and geosciences. Again, results show that social and health sciences represent a very tiny proportion of WoS publications, while biomedicine and molecular sciences are non-existent in InSPIRES projects. Within the health and environmental area, as search terms in WoS primarily captured human health within environmental topics, health sciences was the most predominant discipline, followed by biomedicine/molecular biosciences and clinical medicine. In the other hand, InSPIRES projects are mainly focused on social sciences and psychology, a fact that also contributes to give evidence of the probable mismatch that exists.
5.2.2. HIV/AIDS, Chagas and Leprosy Foremost, research in WoS on chagas and leprosy is concentrated in biomedicine/molecular biosciences and clinical medicine, and it is also characterized by a lack of studies in social sciences and the low presence of health sciences. This data differs from InSPIRES results, which are mainly concentrated in health sciences and social sciences in the case of Chagas, and in health sciences in the case of Leprosy. HIV/AIDS research displays a much more multidisciplinary pattern although clinical medicine and biomedicine/molecular biosciences are still the main scientific fields, but there is also a strong presence of health sciences. In comparison, InSPIRES projects are mainly focused on health sciences and social sciences. Therefore, we see a similar trend as in environment and/or health areas, in which the predominant research types differ between WoS and InSPIRES, with a similar pattern among diseases. There are other aspects resulting from the analysis that are interesting to highlight (even if they are a bit away from the research objective). First of all, the total numbers of publications in WoS clearly demonstrate that chagas and leprosy are relatively small research fields and that HIV/AIDS by comparison is a major research area. This is not surprising as Chagas disease and Leprosy are considered Neglected Tropical Diseases (NTDs) (World Health Organization, n.d. a), that mainly affect low-income populations in the world and historically have not received as much attention as other diseases. It is noteworthy that InSPIRES has addressed these topics, in response the social demands requested by society. Another interesting aspect based on WoS results is that the distribution of the publications show a global ‘division of labor’, where developing countries are more involved in projects ‘on-site’, while more fundamental basic research and development are carried out at laboratories/institutes in Western countries (Agnandji et al., 2012; Owusu-Nimo & Boshoff, 2017). This is supported, for example, by publications on Leprosy, that in Ethiopia and Nepal are
25 focused on clinical medicine in first place, while global and US publications are primarily focused on biomedicine/molecular biosciences. This also happens with HIV/AIDS publications, were it is noted that non-Western countries (excluding Bolivia, as results are only based on 7 publications) are substantially lower present in biomedical studies compared to the Netherlands or Spain. Further investigations could explore if this pattern is also adopted by Science Shop projects.
5.3. InSPIRES implication in responding to unmet social demands This study also provides first and general insights on the role that InSPIRES Science Shops have, not only in responding to social demands through unmet research types, but also in responding to unmet social demands. Results indicate that, the three social demands that have been addressed through InSPIRES projects analyzed (HIV-related stigma, Diet and Chagas and Leprosy post-exposure prophylaxis) might be unmet social demands as they represent low percentage of publications. As shown in the results section, ‘Diet and Chagas’ and ‘Leprosy post-exposure prophylaxis’ represent less than 1% of the global publications in Chagas and Leprosy respectively, while ‘HIV-related stigma’ represents a 5.6% of the global publications on HIV, a proportion that can also be interpreted as low. Country percentages are quite in line with the global results, except from the publications on ‘Leprosy post-exposure prophylaxis’ in Nepal that account for a more than 12%. This fact could be explained because Nepal has long been known as a leprosy endemic country and although Nepal’s government reported the country had reached targets to eliminate the disease as a public health problem, it is still a country with high number of Leprosy cases (World Health Organization, n.d. b). Thus, the Nepali government has an exhaustive Leprosy Control program, which includes leprosy post exposure prophylaxis among their strategies (Department of Health Services, Government of Nepal, n.d). However, as stated previously, at global level ‘Leprosy post-exposure prophylaxis’ seems not to be a priority at all. Overall, results suggest that certain concerns expressed by society are underrepresented among the research publications.
5.4. Limitations The study has some limitations. Firstly, at some point it may be questionable the generalisation of the data because the InSPIRES research type information provided is, in some occasions, based in a low number of projects. Consequently, the data might not be representative of the Science Shops as a whole, but only of the InSPIRES Science Shops. Moreover, there might have been an underestimation of social sciences research in WoS database. This database is biased in favor of the STEM (Science Technology Engineering Mathematics) fields, meaning that its coverage is much less complete in social sciences, arts and humanities. Similarly, the database has an overrepresentation of English-language journals (Monegon & Paul-Hus, 2016; Petr et al., 2021), and thus an under-representation of, for example, Spanish journals (Navas-Fernández, 2016). It is therefore possible that the analysis has not been able to include relevant national journals from the countries included in this study, foremost aimed at social sciences and at various health professions, that would arguably be dealing relatively more with social issues of the diseases/health areas studied. For example, the Norwegian Journal of Welfare Research (in Norwegian: Tidsskrift for velferdsforskning) would typically include papers about e.g. HIV patients’ work life participation, social stigma, etc., and is not picked up in a Web of Science based mapping. Web of Science also has a very limited coverage of book publishing (book
26 chapters and monographs) (Monegon & Paul-Hus, 2016), which is problematic foremost in relation to social sciences and humanities, but also in relation to community-based research. For example, recent numbers from Norway (Nygaard, Aksnes & Piro, unpublished), show that while 98% of all publications from Norwegian researchers in medicine and 97 per cent of the publications in natural sciences are journal articles, this share is 90% in health sciences and 61% in social sciences. In other words, in these fields 10 and 40% of all peer-reviewed academic output are in book formats. Therefore, although Web of Sciences has a very strong coverage of academic output in fields where journal publishing is the norm, there will be some underestimation of the numbers of research for health sciences, and foremost the social sciences. It is important to note though, that there is an ever expansion of Web of Science, and in recent years a large number of South- and Latin American journals have been indexed in the database. Web of Science, with its 34,000 journals is also “the world’s oldest, most widely used and authoritative database of research publications and citations” (Birkle at al., 2020). Despite its shortcomings in coverage of some fields, it is still the most used database for studying publication output in the social sciences as well as other journal-oriented fields, as very few countries have national databases with complete coverage of all social sciences output.
6. CONCLUSIONS
This research aimed to explore if there is a mismatch between InSPIRES Science Shops demand- driven participatory priorities and the research evidence published in reference papers. Specifically, we aimed to explore if InSPIRES Science Shops projects were responding to social demands through unmet research types/disicplines or were responding to unmet social demands at international and community level. Based on a comparative analysis with publications in the database Web of Science, it can be concluded that InSPIRES Science Shop projects contribute to give response to demands through research types and to specific social concerns that, if it was not for Science Shops or similar structures, would probably be ignored. To better understand the implications of the results, future studies should build more evidence and conduct similar analysis to determine with a larger sample if demands collected in a participatory way through Science Shops or similar structures are aligned with current research agendas. The importance that Science Shops have in addressing socially relevant questions is undeniable. . This study gives the first evidences on the important role that Science Shops play and their potentiality to address unmet glocal challenges by shaping participatory research agendas. Therefore, Science Shops should be key intermediary structures to shape local, national and international research policies responding to international common needs and, therefore, it is important to put efforts in ensuring their sustainability.
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Appendix A Table 1: The NordForsk (2017) reclassification of WoS subjects into 16 broad fields
NordForsk field Includes the following Web of Science categories Agricultural Economics & Policy; Agriculture, Dairy & Animal Science; Agriculture, Multidisciplinary; Agronomy; Agriculture, Fisheries & Fisheries; Food Science & Technology; Forestry; Horticulture; Plant Sciences; Soil Science; Water Resources; Forestry Veterinary Sciences. Biodiversity Conservation; Biology; Ecology; Entomology; Evolutionary Biology; Limnology; Marine & Freshwater Biology Biology; Mathematical & Computational Biology; Mycology; Ornithology; Zoology. Anatomy & Morphology; Behavioral Sciences; Biochemical Research Methods; Biochemistry & Molecular Biology; Biophysics; Biotechnology & Applied Microbiology; Cell & Tissue engineering; Cell Biology; Chemistry, Medicinal; Biomedicine & Developmental Biology; Genetics & Heredity; Immunology; Medical Laboratory Technology; Medicine, Research & Molecular Biosciences Experimental; Microbiology; Microscopy; Neurosciences; Parasitology; Pathology; Pharmacology & Pharmacy; Physiology; Reproductive Biology; Toxicology; Virology. Business Studies & Economics Business; Business, Finance; Economics; Management. Chemistry, Analytical; Chemistry, Applied; Chemistry, Inorganic & Nuclear; Chemistry, Multidisciplinary; Chemistry, Chemistry Organic; Chemistry, Physical; Crystallography; Electrochemistry; Polymer Science. Allergy; Andrology; Anesthesiology; Audiology & Speech-Language Pathology; Cardiac & Cardiovascular Systems; Clinical Neurology; Critical Care Medicine; Dentistry, Oral Surgery & Medicine; Dermatology; Emergency Medicine; Endocrinology & Metabolism; Gastroenterology & Hepatology; Geriatrics & Gerontology; Hematology; Infectious Clinical Medicine Diseases; Medicine, General & Internal; Neuroimaging; Obstetrics & Gynecology; Oncology; Ophthalmology; Orthopedics; Otorhinolaryngology; Pediatrics; Peripheral Vascular Disease; Psychiatry; Radiology, Nuclear Medicine & Medical Imaging; Respiratory System; Rheumatology; Surgery; Transplantation; Tropical Medicine; Urology & Nephrology. Computer Science, Artificial Intelligence; Computer Science, Cybernetics; Computer Science, Information Systems; Computer & Computer Science, Interdisciplinary Applications; Computer Science, Software Engineering; Computer Science, Theory Information Sciences & Methods. Agricultural Engineering; Automation & Control Systems; Computer Science, Hardware & Architecture; Construction & Building Technology; Energy & Fuels; Engineering, Aerospace; Engineering, Biomedical; Engineering, Chemical; Engineering, Civil; Engineering, Electrical & Electronic; Engineering, Environmental; Engineering, Geological; Engineering, Industrial; Engineering, Manufacturing; Engineering, Marine; Engineering, Mechanical; Engineering, Engineering Multidisciplinary; Engineering, Ocean; Engineering, Petroleum; Green & Sustainable Science & Technology; Instruments & Instrumentation; Metallurgy & Metallurgical Engineering; Mining & Mineral Processing; Operations Research & Management Science; Robotics; Telecommunications; Thermodynamics; Transportation Science & Technology. Environmental Sciences; Geochemistry & Geophysics; Geography, Physical; Geology; Geosciences, Multidisciplinary; Geosciences Meteorology & Atmospheric Sciences; Mineralogy; Oceanography; Paleontology; Remote Sensing. Gerontology; Health Care Sciences & Services; Health Policy & Services; Integrative & Complementary Medicine; Health Sciences Medical Ethics; Medical Informatics; Medicine, Legal; Nursing; Nutrition & Dietetics; Primary Health Care; Public, Environmental & Occupational Health; Rehabilitation; Social Sciences, Biomedical; Sport Sciences; Substance Abuse. Archaeology; Architecture; Art; Asian Studies; Classics; Cultural Studies; Dance; Ethics; Film, Radio, Television; Folklore; History; History & Philosophy of Science; History of Social Sciences; Humanities, Multidisciplinary; Language Humanities & Linguistics; Linguistics; Literary Reviews; Literary Theory & Criticism; Literature; Literature, African, Australian, Canadian; Literature, American; Literature, British Isles; Literature, German, Dutch, Scandinavian; Literature, Romance; Literature, Slavic; Medieval & Renaissance Studies; Music; Philosophy; Poetry; Religion; Theater. Materials Science, Biomaterials; Materials Science, Ceramics; Materials Science, Characterization & Testing; Materials Materials Science Science, Coatings & Films; Materials Science, Composites; Materials Science, Multidisciplinary; Materials Science, Paper & Wood; Materials Science, Textiles; Nanoscience & Nanotechnology. Mathematics & Statistics Logic; Mathematics; Mathematics, Applied; Mathematics, Interdisciplinary Applications; Statistics & Probability. Acoustics; Astronomy & Astrophysics; Imaging Science & Photographic Technology; Mechanics; Nuclear Science & Technology; Optics; Physics, Applied; Physics, Atomic, Molecular & Chemical; Physics, Condensed Matter; Physics, Physics Fluids & Plasmas; Physics, Mathematical; Physics, Multidisciplinary; Physics, Nuclear; Physics, Particles & Fields; Quantum Science & Technology; Spectroscopy. Psychology; Psychology, Applied; Psychology, Biological; Psychology, Clinical; Psychology, Developmental; Psychology, Psychology Educational; Psychology, Experimental; Psychology, Mathematical; Psychology, Multidisciplinary; Psychology, Psychoanalysis; Psychology, Social. Anthropology; Area Studies; Communication; Criminology & Penology; Demography; Development Studies; Education & Educational Research; Education, Scientific Disciplines; Education, Special; Environmental Studies; Ergonomics; Ethnic Studies; Family Studies; Geography; Hospitality, Leisure, Sport & Tourism; Industrial Relations & Labor; Social Sciences Information Science & Library Science; International Relations; Law; Planning & Development; Political Science; Public Administration; Regional & Urban Planning; Social Issues; Social Sciences, Interdisciplinary; Social Sciences, Mathematical Methods; Social Work; Sociology; Transportation; Urban Studies; Women's Studies.
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Appendix B Table 1. Final selection of projects on specific topics for the analysis
Broad Specific Total nº Partner Partner’s Country of Project Topic topic projects country implementation Health HIV/AIDS 10 IrsiCaixa Spain Spain 1-Community-based participatory research project on HIV-related stigma in collaboration with secondary school students IrsiCaixa Spain Spain 3-Access to the diagnosis of HIV among adolescents in Catalonia IrsiCaixa Spain Spain 4-Co-creation of a communication campaign on social media to prevent HIV and other STDs responsive to the needs identified previously IrsiCaixa Spain Spain 6-Co-ResponsaHIVlity: setting a R&I agenda on HIV and other STI CEADES Bolivia Bolivia 5-Evaluation of the nutritional status through the Chang method applied in HIV positive people undergoing ARV treatment in Cochabamba (Bolivia). CEADES Bolivia Bolivia 6-Effect of HIV/AIDS diagnosis on risk behaviour for transmission of the disease in the department of Cochabamba. IPT Tunisia Tunisia 4-Understanding the perceptions and attitudes of PLHIV, health professionals, decision-makers and civil society regarding medical care of PLVIH. It will help identify difficulties in patient pathways VU Netherlands Netherlands 1-How the Dialogue model can be used in Dutch HIV/AIDS and STI prevention VU Netherlands Nigeria 20-Community responses for HIV: The game changer for equity and access to quality services for key and vulnerable populations in the context of Universal Health Coverage in Nigeria Open Bolivia- Bolivia - 2-Reduction of stigma and discrimination against people living with HIV/AIDS within the health system Call Ecuador Ecuador Health Chagas 5 ISGlobal Spain Spain 1-Access to healthcare for Chagas disease in Zaragoza, Spain CEADES Bolivia Bolivia 1-Effectiveness of motivational training to improve vector control of Chagas in a rural community in Cochabamba (Bolivia) CEADES Bolivia Bolivia 2-Study of the association of adverse effects and the restrictive diet during treatment of Chagas disease CEADES Bolivia Bolivia 3-Peer- education as a model for communication in Chagas disease in Cochabamba (Bolivia) CEADES Bolivia Bolivia 4-Living with Chagas disease: a qualitative study based on family stories in the Alto Valley of Cochabamba (Bolivia) Health Leprosy 4 VU Netherlands Nepal 5-Research Priority Setting of LRI (Leprosy Research Initiative). VU Netherlands Nepal 8-Acceptability of Leprosy Post-Exposure Prophylaxis program in Nepal and actionable factors for future health policy uptake of post-exposure prophylaxis at national level. VU Netherlands Ethiopia 11-Development of a protocol to determine the case detection delay of leprosy in the cultural context of East Hararghe Zone, Ethiopia - A cross-sectional mixed-methods cultural validation study VU Netherlands Nepal 23-Cross-cultural validation of two scales to assess stigma and social participant in leprosy-affected in Kathmandu Valley, Nepal
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Appendix C
Table 1. Social demands selected for each specific topic
Broad Specific Partner’s Country of Specific social Partner Project Topic topic country implementation demand Health HIV/AIDS IrsiCaixa Spain Spain 1-Community-based HIV-related participatory research stigma project on HIV-related stigma in collaboration with secondary school students Open Bolivia- Bolivia - Ecuador 2-Reduction of stigma and HIV-related Call Ecuador discrimination against stigma people living with HIV/AIDS within the health system Health Chagas CEADES Bolivia Bolivia 2-Study of the association Diet and of adverse effects and the Chagas restrictive diet during treatment of Chagas disease Health Leprosy VU Netherlan Nepal 8-Acceptability of Leprosy Leprosy Post- ds Post-Exposure Prophylaxis Exposure program in Nepal and Prophylaxis actionable factors for future health policy uptake of post-exposure prophylaxis at national level.
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Appendix D Table X. Specific topics of the social demands identified and number of projects for each specific topic
Nº of Nº of Topics Topics projects projects HEALTH ENVIRONMENT HIV/AIDS 10 Waste 4 Chagas 5 Climate Change 3 Stakeholder engagement in health 5 Air pollution 2 processes Mental health 4 Environmental sustainability 1 Leprosy 4 Water pollution 1 Sexual health 3 Collective gardens 1 Health care services 3 Ecological transition 1 Mental, Emotional and physical 2 Green energy 1 well-being Diabetes (and high blood 2 pressure) Physical activity (and food 2 nutrition) Loneliness 2 OTHER Hepatitis 1 Urban Planning 7 Citizen science, science cafè, Hearning impairement 1 5 and Science Shops processes Science: Science governance, Lung cancer 1 perception of science, science 4 communication Poverty (health and social impact) 1 Music 2 Enteric viruses 1 Physics 1 Elderly care 1 Human Rights 1 Harm reduction and drug use 1 Civil Society Organisations 1 Insomnia 1 Migration 1 Malaria 1 Professional pathways 1 Maternal and Sexual Health 1 School dropout 1 Social and professional Personalised care 1 1 integration Isolation 1 Social services 1 Domestic violence 1 Solidarity actions 1 Dyslexia 1 Voluntary engagement 1 Housing for senior citizens 1 BOTH Workplace and diversity 1 Green care 8 Youth empowerment 1 Food 7 Local currency 1
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