Ethics of Participatory Health Research:Insights from a reflective journey

Participatory Health Research (PHR) continues to grow in popularity, based on the normative idea that people, whose life or work is the subject of research, have the right to participate in it. Many scientists recognize the importance of involving people with experiential knowledge in research, but there is limited attention to ethical participation in practice. To address the complexity of participatory research, the ICPHR – an international collaboration of academics – drew a set of ethical principles for participatory researchers for the ECBs and participatory research teams. But what does it mean to practice PHR ethically? And, how can we strengthen the ethical nature of participatory research work? These questions were the start of a reflective journey for Barbara Groot, as a participatory researcher, aiming to understand and improve ethics in participatory research. In my journey, I continuously reflected on ethical issues and the moral challenges I encountered; in action, as I call it in this thesis. This study shows that ethical issues arise at the everyday level in PHR, especially in partnership, power, and collaboration. Dealing with these moral dilemmas requires much invisible work that is often not described in a research proposal, budgeted for, or seen as an official role or responsibility of a traditional scientific researcher. Reflections from me, an academic co-researcher, and co-researchers with lived experiences, illustrate that this ethics work is crucial for ethical practice. The study findings show that the ethical work in PHR mainly focuses on two types of ethics: emotion work and relationship work. First, emotion work is about being caring, compassionate, and empathetic, dealing with your own and others’ emotions, building trust, and responding to others’ feelings. This study showed that emotion work, inspired by the theory of care ethics, is a shared responsibility in a team of co-researchers. Sharing the responsibility to care for, care that, and care of, is essential, including self-care. Creating communicative spaces and arts-based methods contributes to emotion work and increases ethical practice in PHR. Second, relationship work involves forming, connecting, facilitating, and forging partnerships and maintaining them for the long term. The most crucial lesson in this study is that a creative and arts-based approach to research can create, deepen, strengthen relationships, and support them in relationship work. Although the academics who worked on the studies included in this thesis aimed to work most ethically, this study showed several examples of experienced epistemic injustice in co-researchers with experiential knowledge. Epistemic injustice is a well-known pitfall in involving people with experiential knowledge but can also occur in PHR – sometimes subtly and sometimes overtly. Epistemic injustice means that co-researchers with experiential knowledge are not always heard or that their knowledge is not valued or used. The underlying cause is in prejudices and frames about what valuable knowledge is and who has it. Putting epistemic injustice on the agenda in research, and creating platforms that contribute to epistemic justice, can be seen as a critical step towards ethical practice. In sum, ethics is an everyday issue in PHR, not only ECB approval obtained at the start of an investigation. The current master's or PhD curriculum pays little attention to the ethics of PPI or participatory research. Becoming aware of the ethical issues of participatory work, and in PHR specifically, is essential to achieve the main goals of inclusion and empowerment. Finally, Communities of Practices (CoPs), such as the Centre for Client Experience and International Collaboration of Participatory Health Research (ICPHR), provide a safe place to learn about ethics and PHR and encourage reflection and action

Ethics of Participatory Health Research: Insights from a reflective journey

Participatory Health Research (PHR) continues to grow in popularity, based on the normative idea that people, whose life or work is the subject of research, have the right to participate in it. Many scientists recognize the importance of involving people with experiential knowledge in research, but there is limited attention to ethical participation in practice. To address the complexity of participatory research, the ICPHR – an international collaboration of academics – drew a set of ethical principles for participatory researchers for the ECBs and participatory research teams. But what does it mean to practice PHR ethically? And, how can we strengthen the ethical nature of participatory research work? These questions were the start of a reflective journey for Barbara Groot, as a participatory researcher, aiming to understand and improve ethics in participatory research. In my journey, I continuously reflected on ethical issues and the moral challenges I encountered; in action, as I call it in this thesis. This study shows that ethical issues arise at the everyday level in PHR, especially in partnership, power, and collaboration. Dealing with these moral dilemmas requires much invisible work that is often not described in a research proposal, budgeted for, or seen as an official role or responsibility of a traditional scientific researcher. Reflections from me, an academic co-researcher, and co-researchers with lived experiences, illustrate that this ethics work is crucial for ethical practice. The study findings show that the ethical work in PHR mainly focuses on two types of ethics: emotion work and relationship work. First, emotion work is about being caring, compassionate, and empathetic, dealing with your own and others’ emotions, building trust, and responding to others’ feelings. This study showed that emotion work, inspired by the theory of care ethics, is a shared responsibility in a team of co-researchers. Sharing the responsibility to care for, care that, and care of, is essential, including self-care. Creating communicative spaces and arts-based methods contributes to emotion work and increases ethical practice in PHR. Second, relationship work involves forming, connecting, facilitating, and forging partnerships and maintaining them for the long term. The most crucial lesson in this study is that a creative and arts-based approach to research can create, deepen, strengthen relationships, and support them in relationship work. Although the academics who worked on the studies included in this thesis aimed to work most ethically, this study showed several examples of experienced epistemic injustice in co-researchers with experiential knowledge. Epistemic injustice is a well-known pitfall in involving people with experiential knowledge but can also occur in PHR – sometimes subtly and sometimes overtly. Epistemic injustice means that co-researchers with experiential knowledge are not always heard or that their knowledge is not valued or used. The underlying cause is in prejudices and frames about what valuable knowledge is and who has it. Putting epistemic injustice on the agenda in research, and creating platforms that contribute to epistemic justice, can be seen as a critical step towards ethical practice. In sum, ethics is an everyday issue in PHR, not only ECB approval obtained at the start of an investigation. The current master's or PhD curriculum pays little attention to the ethics of PPI or participatory research. Becoming aware of the ethical issues of participatory work, and in PHR specifically, is essential to achieve the main goals of inclusion and empowerment. Finally, Communities of Practices (CoPs), such as the Centre for Client Experience and International Collaboration of Participatory Health Research (ICPHR), provide a safe place to learn about ethics and PHR and encourage reflection and action

Zoeken naar betekenisvol innoveren met burgers

Co-creëren met burgers in innovaties: een adagium waarvoor veel partijen de afgelopen jaren hebben gepleit. Onder meer gemeenten, Health~Holland en de Raad voor Volksgezondheid en Samenleving (RVS) adviseren om burgers te laten meedenken, mee-onderzoeken en meedoen in co-creatie in innovaties in wijken. Denk aan innovaties om in te spelen op de grote uitdagingen van deze tijd: het verkleinen van sociaaleconomische gezondheidsverschillen, de ontgroening van de samenleving, de energietransitie, de aanpak van pandemieën, et cetera. In het Livinglab-project It takes a village to grow old werken burgers verenigd in een burgerinitiatief, onderzoekers vanuit allerlei disciplines, architecten, AI-experts, kunstenaars en cliëntenorganisaties samen aan innovatie om nabuurschap in de wijk te vergroten (zie ook kader). Hoe gaat dit? Wat werkt en welke hobbels hebben we moeten overwinnen?<br/

Participatory action research and intersectionality: a critical dialogical reflection of a study with older adults

PurposeResearchers who work in partnership with older adults in participatory studies often experience various advantages, but also complex ethical questions or even encounter obstacles during the research process. This paper aims to provide insights into the value of an intersectional lens in participatory research to understand how power plays out within a mixed research team of academic and community co-researchers.Design/methodology/approachFour academic researchers reflected in a case-study approach in a dialogical way on two critical case examples with the most learning potential by written dialogical and via face-to-face meetings in duos or trios. This study used an intersectionality-informed analysis.FindingsThis study shows that the intersectional lens helped the authors to understand the interactions of key players in the study and their different social locations. Intersections of age, gender, ethnicity/class and professional status stood out as categories in conflict. In hindsight, forms of privilege and oppression became more apparent. The authors also understood that they reproduced traditional power dynamics within the group of co-researchers and between academic and community co-researchers that did not match their mission for horizontal relations. This study showed that academics, although they wanted to work toward social inclusion and equality, were bystanders and people who reproduced power relations at several crucial moments. This was disempowering for certain older individuals and social groups and marginalized their voices and interests.Originality/valueTill now, not many scholars wrote in-depth about race- and age-related tensions in partnerships in participatory action research or related approaches, especially not about tensions in research with older people.<br/

Enhancing citizens’ participation in the community to promote health and wellbeing: learning from a project on Age friendly City (AFC) with seniors as co-researchers

Background In 2015, Amsterdam became part of the WHO Age Friendly City community, thereby accepting the responsibility to work towards a more age friendly Amsterdam. To study senior citizens’ needs and wishes concerning the age friendliness of their neighbourhood, the municipality asked the Amsterdam University of Applied Science to set up two pilot projects in two neighbourhoods. Aim was to 1) gain insight in seniors’ views and wishes regarding an age friendly city, and 2) reflect on the experiences with working with senior co-researchers. Methodology The study followed a Participatory Action Research approach with research teams consisting of seniors as co-researchers and professional researchers. We chose two neighbourhoods with distinct characteristics: the Indische Buurt which is centrally located, vibrant, multicultural, and strongly gentrifying, and Buitenveldert, a suburban and spacious neighbourhood, with less facilities and a dominance of well-to-do senior citizens. In both areas, we recruited senior co-researchers to form the research teams. They generally lived in, or close to, the pilot neighbourhood, and varied in age and ethnical background. The aim was to put the co-researchers in the lead during the entire research process. However, it differed between the neighbourhoods which type of researcher was in the lead. As a team, they formulated the main research question, constructed a topic list for interviews with older citizens, convened the interviews, analysed the data, wrote the report, and presented the results. During the entire process, they were supported by professional researchers. Both research teams interviewed 40 senior citizens, who were recruited through the co-researchers’ networks, professional care organisations, neighbourhood communities, and local media. We intended to gather a sample representative for the neighbourhood population. In the Indische Buurt, this proved to be difficult, since the relatively large Turkish and Moroccan communities were difficult to get into contact with, and it was hard to find co-researchers from those communities who could have provided a way in. Process and outcomes We will share some of the results, but we will mainly reflect on the research process. Process Regarding the process, we found some differences between the two neighbourhoods. In the Indische Buurt, it took much effort to find co-researchers, since the seniors we encountered said to be too busy with other neighbourhood activities. We did recruit a small group of four co-researchers of different ethnical background, but sadly lacking Turkish and Moroccan seniors. They started with a very limited research experience and experienced ownership, which greatly increased during the process. At the finalisation of the project, the group ceased to be, but the outcomes were followed up by existing groups and organisations in the neighbourhood. In Buitenveldert, a large group of co-researchers was recruited in no-time, bearing more resemblance to an action group than a research group. They were generally highly educated and some already had research experience. The group proved to be pro-active, had a strong feeling of ownership, and worked in constant collaboration with the ‘professional’ researchers, respecting each other’s knowledge and skills. At the finalisation of the project, the group remained active as partner of the local government. Outcomes Concerning the content of the outcomes, we found some expected differences and unexpected similarities. For instance, we expected to find different outcomes concerning housing and facilities between the neighbourhoods. Indeed, in Buitenveldert, housing was already age friendly whereas facilities were scarce and geographically far apart. Yet, in the Indische Buurt, housing was poorly equipped for physically impaired seniors, but facilities were abundant and close by. We also found that, in both neighbourhoods, senior citizens were reluctant to share their limitations and ask for support, despite differences in neighbourhood, ethnicity, age etc. Of course, this can be expected of seniors from the ‘silent generation’. However, they seemingly shared these emotions more easily with their peers than with professional researchers. Conclusion The social-cultural context of the neighbourhood impacts the research process. Overall, co-research appears to be a fruitful method to involve senior citizens in decisions concerning the improvement of their neighbourhood. Aims and content of the workshop We aim to: • present our reflections on the participative process of working with senior co-researchers in Amsterdam • exchange and discuss with the participants of the workshop the lessons learned on how to facilitate citizens’ participation in the community • discuss similar and future projects and possibilities for collaboration among the participants of the workshop Content of the workshop • Presentation • Exchange and discussion in small groups • Plenary discussion on possible collaboration projects aiming to enhance citizens’ participation in the communit