Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Heyen, Nils B.; Gardecki, Johanna; Eidt-Koch, Daniela; Schlangen, Miriam; Pauly, Sophie; Eickmeier, Olaf; Wagner, Thomas; Bratan, Tanja

doi:10.35844/001c.35634

Cited by 10 publications

(7 citation statements)

References 48 publications

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“…Movements like ‘MeToo’ and ‘Black Lives Matter’ as well as the global climate activist strikes ‘Fridays for Futures’, have highlighted the role individuals may play in bringing about change, as well as the importance of distributing responsibilities and recognising contributions from those individuals. Within medical fields, this is expanded upon in such a way that there is now an increased emphasis on involving patients in the planning of their care and treatments, as well as in relevant research, not just in the United Kingdom, but also elsewhere (see, for instance, Heyen et al, 2022; Malterud and Elvbakken, 2020). One consequence of the trend towards more egalitarian research with distributed roles and responsibilities is that an increasing number of charities and independent organisations are developing their own research agendas, specifically to explore ‘what works’ in evaluative and exploratory studies.…”

Section: The Changing Social Sciences Landscapementioning

confidence: 99%

Research ethics in a changing social sciences landscape

Brown

2022

Research Ethics

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The role of research ethics committees, and research ethics issues more broadly are often not viewed in the context of the development of scientific methods and the academic community. This topic piece seeks to redress this gap. I begin with a brief outline of the changes we experience within the social sciences before exploring in more detail their impact on research ethics and the practices of research ethics committees. I conclude with recommendations for how the existing research ethics processes may be made more future-proof.

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Section: The Changing Social Sciences Landscapementioning

confidence: 99%

Research ethics in a changing social sciences landscape

Brown

2022

Research Ethics

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“…In so-called "Personal Science" projects, citizens put forward their own hypothesis for their personal "experiment", track their own health and make adjustments to improve it [7]. Other CS4H projects involve patients or clients as coresearchers throughout every step of the entire research cycle [5,8]. While co-design techniques increase the likelihood of the outcome or final product suiting the needs and preferences of the citizens involved, they generally require higher-order cognitive skills from citizens such as creative thinking, empathizing, conceptualization, and thinking ahead.…”

Section: Mental Models For Citizen Science For Healthmentioning

confidence: 99%

The role of mental models in citizen science

Егорова¹,

Driesche²,

Bevelander³

2022

Proceedings of Engaging Citizen Science Conference 2022 — PoS(CitSci2022)

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An increasing number of citizen science projects involve citizens on levels of participation that go beyond data collection and entail the co-creation of research questions and methods as well as the project pathway. The success of such projects depends on the establishment of shared knowledge, a task that can be especially challenging in citizen science that focuses on complex societal issues and the so-called wicked problems. We suggest that this challenge can be addressed through a deeper engagement with research on mental models-cognitive representations of external reality that largely define human thinking, decision-making and behaviour. Moreover, particular emphasis should be placed on the effective co-creation of shared mental models, whereby design thinking could provide valuable methodologies and tools. The objective of the workshop "Mental Models in Citizen Science" was to dive into mental model theory and design thinking toolbox and explore their potential for citizen science. This paper provides an overview of the workshop activities and insights and proposes a research agenda shaped around mental models and their role in citizen science.

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“…In contrast, citizen scientists' involvement in citizen science studies is active, multistage and voluntary except reimbursement of some expenses and there are opportunities of training, learning and knowledge production (Haklay et al 2021). Nonetheless, patients have been involved as citizen scientists in research studies (Heyen et al 2022) but it is not always feasible to involve patients as citizen scientists because of the participants' privacy, anonymity and ethical reasons (Groot and Abma 2022). Through this study we aim to explore the application of the citizen science approach in translational medicine research.…”

Section: Introductionmentioning

confidence: 99%

Adopting a citizen science approach in translational experimental medicine research in non-alcoholic fatty liver disease: A study protocol

Shah

Barrado‐Martín

Marjot

et al. 2023

Preprint

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Background Citizen science approaches are widely and successfully used in biological, environmental, and ecological sciences; however, they are rarely applied in other domains, such as translational health research, notably in the field of liver disease and metabolism. This citizen science study aims to explore the application of the citizen science approach in a translational experimental medicine experiment on non-alcoholic fatty liver disease (NAFLD) and a 12-week lifestyle and weight loss program. In this methodological paper we describe the process of involving citizen scientists in the study.Methods In his exploratory study, we will recruit a convenience sample of thirty-one participants (with and without NAFLD) and a half-dozen citizen scientists (members of public). Citizen scientists will work alongside clinical and non-clinical researchers in a translational experimental medicine study on NAFLD. Citizen scientists will be involved in the co-design and/or review of data collection tools (e.g., semi-structured open-ended questionnaire surveys and semi-structured wellbeing diaries completed by the participants), co-analysis of data on participants’ experiences and motivations, co-drafting of research findings and papers, and suggesting policy recommendations. Citizen scientists will be provided training in research tasks undertaken by them. Citizen scientists will be either co-authors or their names will be mentioned in the acknowledgements in research paper(s) based on the level of research contributions.Discussion Lessons learned from implementing citizen science in this study will help better understand the advantages and disadvantages of using citizen science in the field of translational medicine research. It will also provide insights as to how citizen science can be integrated in other translational research studies.Conclusion Involving citizen scientists in translational medicine research is important for extending research opportunities for member of the public; however, there may be methodological challenges, which may be identified and resolved by more research studies.

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Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers

Cited by 10 publications

References 48 publications

Research ethics in a changing social sciences landscape

Research ethics in a changing social sciences landscape

The role of mental models in citizen science

Adopting a citizen science approach in translational experimental medicine research in non-alcoholic fatty liver disease: A study protocol

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