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