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Abstract
The need for the public to take an active role in scientific research is becoming increasingly important, particularly in health-related research. However, the coexistence and alignment of scientific and citizen interests, needs, knowledge and timing is not straightforward, especially when involving migrant populations. To conduct impactful research, it becomes also essential to consider the perspectives of policymakers, thereby adding a layer of complexity to the processes.
In this article we address the experience of a living lab created in a research institution and supported by the city council and a local foundation, in which we developed three experiences of patient and public involvement (PPI): (1) accessing to comprehensive care for people at risk of Chagas disease; (2) strategies towards improving access and quality of mental healthcare services in migrants; (3) promoting healthy and safe school environments in vulnerable urban settings.
These three challenges provided an opportunity to delve into diverse strategies for involving key stakeholders, including migrant populations, expert researchers and political actors in health research. This article offers insights into the successes, challenges, and valuable lessons learnt from these endeavours, providing a vision that can be beneficial for future initiatives. Each living lab experience crafted its unique governance system and agenda tailored to specific challenge scenarios, giving rise to diverse methods and study designs.
We have found that the management of the cocreation of the research question and the institutional support are key to building robust PPI processes with migrant groups.
- Diagnostics and tools
- Health services research
- Public Health
- Health education and promotion
- Global Health
Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study. No data available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- Diagnostics and tools
- Health services research
- Public Health
- Health education and promotion
- Global Health
Summary box
Patient and public involvement (PPI) is necessary towards health research with social impact. Living labs, as a PPI model, are usually used to cocreate technology solutions but may also be a good strategy to cocreate health research with translation to policy making.
Special strategies need to be applied to engage migrant groups (usually missed in knowledge cocreation spaces) and to use appropriate methodologies, paying attention in the process to overcome the cultural and language barriers and a pragmatic approach with short-term results.
The involvement of both policy makers and migrant population in research needs trust, transparency, flexibility and building step-by-step.
Research institutions need expert teams in participatory research methodologies and structural resources to impulse and support these projects within the research activity.
Introduction
The importance of patient and public involvement (PPI) in the design and implementation of health research is gaining widespread recognition. PPI aims to integrate the perspectives of citizens and patients into research activities,1 2 being the inclusion of people demands as trigger of research questions and processes.3 This participatory research approach encompasses research designs, methods and frameworks in direct collaboration with those affected by the issue being studied.4 This approach has become more common in healthcare, health prevention and promotion, highlighting the need to focus research on solving real-life problems and needs of citizens and patients. While participants will feel empowered, valued, more skilful and knowledgeable about their conditions,1 researchers gain a better understanding of their research area.1 5 Participatory research also improves patient information, patient involvement in decision making and quality of care.1
Living labs are research and innovation ecosystems that have been widely used to solve complex social problems6 7 and to promote participatory research. Living labs are characterised by multi-method approach, user engagement, multiple stakeholders, real-life settings and cocreation of solutions.8 The participation of the different stakeholders involved in the problem (including public decision-makers, providers, researchers, citizens, etc) throughout the research cycle is the main characteristic of this approach. The living lab principles are similar to the principles of community-based participatory research, a popular approach for promoting community health. There are numerous experiences of living labs focused on the design of healthcare programmes and services, but mostly addressed to older adult population or patients.9
This manuscript describes how we approached the creation of a health research living lab in the city of Barcelona, as well as how we instrumentalised the development of cocreation strategies with migrant populations, professionals and public stakeholders to address the health challenges affecting these vulnerable groups.
Our participatory research experience: the Barcelona Caixa Research Living Lab
In 2018, the city council of Barcelona in collaboration with La Caixa Foundation and two health research institutes, the Barcelona Institute for Global Health (ISGlobal) and IRSI Caixa, created the Barcelona Caixa Research Living Lab (BCLL). BCLL was born as a scientific intermediation structure to respond to several health research challenges in Barcelona.10
The leading institutions of BCLL set up a steering committee that established the research areas to be addressed by each centre based on the social needs and health challenges detected by Barcelona City Council, as well as existing opportunities known from the expertise of the research centres. While there has been an increasing community involvement in the development and delivery of health services as well as in health research, there is a pattern of exclusion whereby vulnerable communities are not usually involved. Because of this reason, we decided to work with these groups that ended in the majority being migrant populations. The selected research areas were (1) urban health in vulnerable school environments, (2) Chagas disease and (3) mental health. Once the areas were defined, we developed a stakeholders’ mapping for each area to identify research needs and opportunities with them.
The result was the development of three distinct living lab experiences related to health challenges in migrant populations, defining migrant as a person who is moving or has moved across an international border from low-/middle-income countries.
Each living lab experience built its own governance system and its own agenda, which rose to different methods and study designs. In each one, cocreation processes have been developed throughout the research cycle with the participation of different stakeholders from the local public administration, the scientific community and the civil society (figure 1).
The research cycle of the Living Lab.
Three case studies for generating evidence-based policymaking
Case 1: access to comprehensive care for people at risk of Chagas disease
Integrating all the dimensions of Chagas disease in approaches that are consistent with the reality and social needs of each setting and that involve actors at different levels of care,11–13 is a challenging but necessary approach to improve the control of Chagas disease,14 including the early detection of cases and adherence to the treatment.14 15
The project was co-led and cocreated from the beginning by the different types of stakeholders who formed the driving group. This included medical institutions, international organisations, representative of migrant communities from endemic countries, Chagas disease patients’ association from Barcelona, researchers and migrants from endemic countries in Latin America (some of them representatives of migrant associations). Further details about sociodemographic of participants, how they were recruited and rules for participation are detailed in online supplemental annex 1. The average profile was a middle-aged woman with low studies and precarious job.
Supplemental material
The main challenge that was brought up at the beginning of the process was the need to include and take the voice of the patients in the approach to the disease, avoiding the academic or medical-centred approaches. This request required a fully bottom-up process design to gain their involvement and trust (online supplemental annex 2).
Three workshops were necessary to determine the research agenda and designing the studies. The process resulted in the need for codesigning, cocreating and coevaluating a communication campaign based on three short videos to promote awareness about Chagas disease, in which some of the members of the driving group were featured themselves (#VocesDelChagas).16 The campaign website, the texts to support the videos and a guide for dissemination of the videos on social networks were also cocreated.
Finally, a research study was codesigned to do a process evaluation to assess the perceptions regarding the video of patients with Chagas disease and the civil society groups and the impact on the health-seeking behaviour of people at risk of the infection.
Case 2: improving access and quality of mental healthcare services for migrants
The complexity of mental health problems in migrant populations17–20 suggests the need to promote participatory research approaches, to include the perception and voice of these groups. The lack of previous research on migrant mental health englobing participatory approaches, and the difficulties to link different public and non-public stakeholders led us to propose a first research cycle using qualitative and participatory methodologies. This first cycle involved migrant groups from different countries, professionals and policy makers in the field of health, social services and inter-cultural mediation (online supplemental annex 3).
The results of the first cycle allowed us to identify mental health needs, strategies and gaps for action plans. With these results we started a new cycle, establishing contacts and partnerships with other stakeholders including providers and research centres. A new working group with different actors (see online supplemental annex 3) was created to define and codesign a new research project: a research protocol to develop and evaluate a community mental health pilot intervention cocreated with migrant women (online supplemental annex 3).
Case 3: healthy and safe school environments in vulnerable urban settings
School environments are public spaces that offer a good opportunity to improve the physical and mental health and well-being of children, young people and the whole community, to promote environmental justice and to reduce inequalities.21 22 To address this topic, we developed a first research cycle with a driving group composed of institutions involved in school environments programmes (online supplemental annex 4). This group identified the need to include social vulnerability in the conceptualisation of urban vulnerability (so far mainly taken from environmental indicators),22–24 and to focus the research on vulnerable school environments. This generated a second research cycle based on a school in a socially vulnerable context. Once the primary school was selected, the second cycle started in which the actors and needs were identified and a diagnosis was drawn up again, focusing on the territory and school (online supplemental annex 4). Most of the families had a migrant origin (mostly from Pakistan, Morocco and Senegal), with important language barriers. We used photovoice methodology25 to work in small groups and we organised a final participatory workshop with families representing all the courses in the school that contrasted and validated the diagnosis of the small groups and codesigned potential strategies and solutions, with governmental institutions taking a leading role in the implementation process. Finally, an intervention in the school playground was the main action carried out and monitored by the project (online supplemental annex 5).
Subsequently, a research proposal was created to evaluate the impact of urban vulnerability on the participation in programmes related to school environment transformation and to evaluate appropriate cocreation methodologies to ensure equitable access to these programmes. We currently plan to codesign and develop this research.
Lessons learnt: the living lab as a collaborative space for responding to real needs of migrants with intercultural perspective
The actions related to the health challenges developed were aimed at preventing, promoting and improving migrant health. We were able to understand why some existing resources are not used by the migrants, defining usage barriers (different from access barriers) for the Chagas and the mental health challenges. Specifically, the participation of patients with Chagas disease in defining problems and seeking solutions also generated empowerment and re-appropriation of health by these groups, amplifying the impact at the community level.
The major challenge was to design standard research protocols that fit the needs, interests and timelines of all stakeholders. Each challenge needed different designs. In two cases, the research protocol approvals were a result of a very long participatory approach. This means that cocreating the right research question to generate knowledge and impactful research which can be translated into solutions in the short or medium term is not easy. Accordingly, the involvement of both policy makers and migrant populations in participatory research needs trust, transparency, flexibility and building step-by-step.
The conflict of needs, timelines, power dynamics and expectations create governance challenges that have a direct impact on the formulation of the research question. A living lab promoted by the city council exacerbates the challenges already inherent in participatory research with migrant populations,26 as it can generate expectations for policy impact.
When the public actor plays a significant role in defining the challenge, their political competencies, priorities, and established procedural norms become prominent, which can be time-consuming and limit innovation. The desire to develop a living lab with an impact on municipal policies highlighted the conflict that these spaces can generate over the control of the process and the management of expectations. In our experience with the migrant mental health challenge, we realised that preliminary research to summarise the evidence in the topic should be established prior to engaging public stakeholders. Given the relative novelty of these methodologies and the scepticism of the public administration, it was essential to guide them about the potential advantages of their participation.
On the other hand, when the scientific community is responsible for defining the health challenge, the focus shifts to the generation of knowledge, but not necessarily on short-term problem resolution. In the Chagas disease case, we experienced that migrants were less interested in their own participation when they perceived the focus on academic research (evaluation protocol in this case), which was not connected with short-term political or social actions. In these cases, they preferred to be outsiders. When we work with populations in vulnerable situations, we need to be able to produce some clear, concrete and short-term results to avoid disaffection. Most of our participants were migrant women, middle-aged, with low educational background and without previous participatory experiences. This required a bigger effort to transparency about the objectives and expectations in order to prevent potential power dynamics and to translate individual needs into research objectives. We could see how important was for them to understand that their participation could be useful and potentially have an indirect impact on their lives. The equilibrium between long-term and short-term results was an important key for the engagement of all the stakeholders. At the same time, it contributed to an empowerment impact for socially disadvantaged populations, as they could better understand the logic of academic research and political action.2
The best way we found to embed different stakeholders in a long-term project was creating different research cycles to go from general to specific questions, involving different stakeholders gradually in the process. That means that effective governance is key for collaborative research spaces. Governance is one of the challenges identified in living labs.27 BCLL has proven to be a successful strategy for the cogeneration of scientific evidence. It was particularly interesting for cocreating evidence-based solutions. In this regard, the BCLL allowed us to codesign a research protocol, that was led by a mixed team composed of intercultural mediators, academics and service providers, based on needs and strategies defined by migrant populations, as was the case of the migrant mental health challenge. Furthermore, we could cocreate and coevaluate with a group of migrants some solutions based on previous existing scientific evidence, in the case of the Chagas disease challenge.
However, BCLL has not yielded such clear results when it focused more on having an impact on public policies compared with a standard scientific strategy, as it occurred in the school environment challenge. Additionally, securing funding to implement actions (prototype) with a cocreation-oriented research approach is a significant challenge.
Discussion
We have shown how participatory health research with migrants can generate a more comprehensive knowledge that leads to more responsive policies and healthcare services, facilitating a cultural understanding of the health-illness phenomenon and a culturally meaningful approach to solutions. This can contribute to the empowerment of individuals and their communities.28
Living labs focused on health research with vulnerable populations are uncommon. Despite patients and other community groups increasingly being involved in health decision-making, marginalised groups (ie, migrants) are usually excluded and they are not involved to the same extent.29 However, a recent report suggests that there is an increasing involvement of migrants in health decision-making.28 But this usually refers to participation in service delivery, such as public health initiatives, rather than policy-making or research. Within the field of health research, migrant communities face under-representation28 for several reasons, including language barriers and hesitance to participate due to a lack of trust.30 This may lead to policies and practices biased towards the dominant population groups where health needs of the diverse migrant groups are not properly considered.28
We have found several examples where migrant communities were involved in the research study with academic partners31 32 but without a clear impact on health policies. Our experience of creating a living lab in coordination with a city council and other public stakeholders and policy makers ensures that research outcomes can generate indeed a social impact in this area while improving health outcomes and reducing health disparities. At the same time, the involvement of civil society including migrant communities, suggests that the independence of the participatory research structure is very important to develop viable, innovative and bottom-up processes.
However, we cannot establish a predeterminate methodology, as the profile, language and cultural barriers, personal implications, etc can substantially vary.33 Living labs provide an inclusive and flexible research framework that fosters cultural humility, colearning and trust and thereby, allows for more person-centred, transformative and pragmatic approaches to the research process. In this regard, in our three case studies, the profile of migrants was very heterogeneous, and so were the methods we used to approach the research studies. In the Chagas disease case, there were mainly LA migrant women, and they belonged to patients’ associations, whereas in the case of school environments in vulnerable urban settings, the profile was more heterogeneous with participants from different continents, with more language barriers.
Different studies have highlighted the challenges of doing research with migrants, including differences in cultural beliefs and participatory traditions, balancing the culture and expectations, building trust, operational challenges, power dynamics and expected short-term impacts of the research studies that may not be the case for the majority of research studies.33 Other challenges include the so-called ‘hard-to-reach populations’ that also need to be considered. This can be even more pronounced in the framework of participatory research where the time that they need to dedicate can substantially increase.
In this regard, participatory research and PPI require learning and training processes for all parties involved. Citizens need to learn about research procedures and to think in more long-term goals and common profit. Scientists need to learn new and inclusive methodologies, recognise citizens’ knowledge and gain facilitation and governance skills.2 Public administration needs to become more flexible and make space for innovation, creativity and cocreation possible.
Despite the progress made in the academic world to include citizens and patients in health research, most scientific institutions are not open enough to participatory action research, in the sense that this is not a research process driven by the imperative to generate knowledge for scientific progress, or knowledge for knowledge’s sake; but it is a process for generating knowledge-for-action and also for generating knowledge-through-action, in service of goals of specific communities.34 We therefore consider it essential to create internal spaces that facilitate training, advice, access to funding resources or facilitate ethic debates, among others in the scientific community. What was initially conceived in our institution as a set of participatory research projects, has evolved into a cross-cutting internal structure dedicated to promoting PPI and participatory health research inside and outside our centre. This structure strives to be a bridge between researchers, citizens and policy makers and a strong support for the researchers to impulse participatory research. It is essential to impulse participative approaches in research, provide the training and support to research teams and push the alliance building for coresearch projects. But it is necessary to have a properly funded supportive organisational infrastructure to implement a sustainable structure in which experts in participatory research methods can promote and provide support, advice and guidance to research teams throughout the research cycle.
Conclusion
A living lab can be a good approach for PPI with migrant groups, to generate social and health impact research, reducing the gap between scientific research, policy making and their needs; and empowering all stakeholders. Migrants re-appropriate their health and the processes of knowledge and transformation; the scientific community gains more social impact; public policies gain more evidence to legitimise them; and the industry can better match their products to social needs.
Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study. No data available.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by Hospital Clinic HCB/2021/0256. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We acknowledge all the citizens that made the project possible with their voluntary participation. In addition, we acknowledge the three institutions that promoted and supported the Barcelona Caixa Research Living Lab with ISGlobal: Fundació 'la Caixa', Ajuntament de Barcelona, IrsiCaixa and their membres in the steering committee (Ignasi López, Jorge García, Anna Broll, Rosina Malagrida, Marina Pino).
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Handling editor Helen J Surana
X @menahia
Contributors LG conceptualised the project and developed the design of the interventions, coordinated the interventions in the field and wrote the first draft of the manuscript. MJP conceptualised the project and developed the design of the interventions and have contributed by reviewing and editing the final document. AS-G conceptualised the project and developed the design of the interventions and have contributed by reviewing and editing the final document. OR coordinated the interventions in the field within the Barcelona City Council and have contributed by reviewing and editing the final document. MU-L coordinated the interventions in the field and have contributed by reviewing and editing the final document. LdlT coordinated the interventions in the field and have contributed by reviewing and editing the final document. SE coordinated the interventions in the field and have contributed by reviewing and editing the final document. EM supported the activities in the field projects. AR-M wrote the first draft of the manuscript and was responsible for the overall content as guarantor.
Funding The article is funded by La Caixa Foundation. ISGlobal receives funding through the grant CEX2018-000806-S funded by MCIN/AEI/ 10.13039/501100011033, and support from the Generalitat de Catalunya through the CERCA Programme.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.