In a marginal voice. From participatory to emancipatory research

American Journal of Bioethics, 2019

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly say that citizen science, in including the public in scientific research, relates to participatory action research and action research. They notice that this is no longer prominent in current forms of citizen science, which focus on involving the public in data collection and data analysis. We argue that participatory health research (PHR), which, in terms of Wiggins and Wilbanks (2019), emphasizes co-creation with rather than contribution of the public, may help to identify ethical issues that are not in the forefront, and to find new ways of dealing with them by focusing on relationships between citizen researchers and academic researchers and fostering participatory reflection on everyday ethical issues.

Social Science & Medicine, 1995

Abstrmct--Research strategies which emphasize participation are increasingly used in health research. Breaking the linear mould of conventional research, participatory research focuses on a process of sequential reflection and action, earned out with and by local people rather than on them. Local knowledge and perspectives are not only acknowledged but form the basis for research and planning. Many of the methods used in participatory research are drawn from mainstream disciplines and conventional research itself involves varying degrees of participation. The key difference between participatory, and conventional methodologies lies in the location of power in the research process. We review some of the participatory methodologies which are currently being popularized in health research, focusing on the issue of control over the research process. Participatory research raises personal, professional and political challenges which go beyond the bounds of the production of information. Problematizing 'participation', we explore the challenges and dilemmas of participatory practice.

Democratising Participatory Research, 2022

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Archives of Public Health

In this commentary we assert that the rights and responsibilities of the community at large as an important key stakeholder in the effort of advancing health through research and discovery have not been carefully examined and delineated. The time has come to investigate the nature of the rights and responsibilities of the public in advancing health through research and discovery. We argue that the public has the right not merely to participate in research and have their rights protected, but that they have a right to engage in and take ownership in research.

American Journal of Bioethics, 2019

Democratising Participatory Research hard work have been a constant source of inspiration to me. Thank you for this and our long conversations about Africa, South Africa and social injustices, which helped me to develop many of the ideas in this book. To my beloved husband, Sander van Leusden, thank you for remaining supportive and caring despite my ups and downs throughout this book. The journey has not been easy, but I could not imagine undertaking it without you. You have been a central pillar of strength for my work. Finally, but not least, to all the DCR co-researchers that took part in the collaborative inquiry, thank you for your enthusiasm, dedication and hard-work despite your academic commitments. Without you this book would not have been possible. I feel grateful for our friendships and to have shared with you all this time during and since the project. For Sphe As a young, working-class girl who grew up in a mono-parental family in the South of Spain, knowledge meant something simple but also something unattainable. First, it was clear to me that we all have the capacity to know many things to a certain extent. Back then, I thought my mother knew a lot, many adults did as well. They knew how to do things and how things worked in the local context. However, there was another kind of knowing that was relegated to others, especially not for a family like mine, the knowing from universities and what is usually understood as scientific or academic knowledge. University knowledge, the knowledge nourished within universities' walls, was a mystery to me and many of the members of my family and friends, however, somehow whoever was able to access it or embodied it through university degrees or any diploma would become something 'more'. This 'more', was not a distinction between which kinds of academic knowledge we were talking about. It was an intrinsic value that raised the person possessing scientific knowledge to a level of dignity that was strange to imagine for someone who had never been seen in that light. Equally, becoming 'more' meant of course, we were 'less'; less respectable, less educated, less intelligent, and less dignified than those who were part and parcel of these elitist institutions. And all this became overwhelmingly clear when I first entered university at the age of eighteen and, as expected, I failed, and I dropped out during my second year. I was constantly wondering: how do I not belong in this university when everyone said (directly or indirectly) to me that this is what I have to do to become a dignified human being in my society? To have opportunities, to have a voice, to have freedoms, 1. Introduction De Sousa Santos, B. (2010). Descolonizar el saber, reinventar el poder. Montevideo: Ediciones Trilce. http://www.boaventuradesousasantos.pt/media/ Descolonizar%20el%20saber_final%20-%20C%C3%B3pia.pdf.

PLOS ONE, 2022

Participatory research (PR) is on the rise. In Spain, PR is scarce in the field of health, although there is an increasing interest in the matter. A comprehensive understanding of the meanings and practical implications of "public participation" is essential to promote participation in health research. The aim of the study is to explore the discursive positions on PR among individuals with experience in participatory processes in different areas and how this understanding translates into practice. We conducted a critical discourse analysis of 21 individuals with experience in PR and participatory processes (13 women, 8 men), mainly from the field of health and other areas of knowledge. Sixteen were Spanish and the rest were from the United Kingdom (3), United States (1), and Canada (1). Interviews were conducted in person or by telephone. The fieldwork was conducted between March 2019 and November 2019. The dominant discourses on public participation are situated along two axes situated on a continuum: the purpose of public participation and how power should be distributed in public participation processes. The first is instrumental public participation, which sees participatory research as a tool to improve research results and focuses on institutional interests and power-decision making is hold by researchers and institutions. The second, is transformative public participation, with a focus on social change and an equitable sharing of decision-making power between the public and researchers. All discursive positions stated that they do not carry out specific strategies to include the most socially disadvantaged individuals or groups. A shift in the scientific approach about knowledge, along with time and resources, are required to move towards a more balanced power distribution in the processes involving the public.

2018

Participatory Health Research

Family Practice, 2016