Citizen Science in Human Medicine and the Use of Software-Systems: A Rapid Scoping Review

Schaaf, Jannik; Neff, Michaela; Scheidt, Jörg; Steglich, Michael; Storf, Holger

doi:10.3233/shti210557

Cited by 3 publications

(4 citation statements)

References 18 publications

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“…Online tools have currently become researchers' best allies in citizen science (CS) projects. This aligns with what Schaaf et al have presented regarding the use of computer systems for research [56], mainly participation through mobile or web applications. This is the case of CovidWatcher [49] and other specific citizen science applications like the Standford Healthy Neighborhood Discovery Tool, used in two out of the thirteen selected projects [39,42].…”

Section: Discussionsupporting

confidence: 88%

Citizen Science Studies in Nursing: A Systematic Review

Torró-Pons,

Saus-Ortega,

Ballestar-Tarín

2024

Nursing Reports

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Background: Citizen science is a research approach wherein citizens actively participate alongside professionals in some or all stages of the research process. The bidirectional benefits it generates, especially in the field of health, including empowerment, new hypotheses, and results, and addressing issues truly important to society, justify the necessity to establish a common framework and address barriers to ensure a fruitful evolution of this new approach within nursing research. The aim was to analyze nursing projects with a citizen science focus that have been conducted. Methods: PRISMA guidelines were employed to conduct a systematic review. Searches were conducted on PubMed, CINHAL, LILACS, IBECS, and Cochrane. Following the identification and screening process, 13 studies were included. The quality of the articles was assessed using the Joanna Brigg Institute (JBI) critical appraisal checklist and the quality of citizen science research using the Citizen Science Appraisal Tool. Results: Citizen science studies in nursing were notably recent (2017–2023). Five research areas were identified, with environmental health being the most predominant. Multiple tools, both technological and traditional, were utilized, with the “Photovoice” and “Our Voice” methodologies being prominent. Citizen participation was limited to data collection and analysis in 7 out of the 13 studies, with most studies working with small samples. Findings regarding the application of this practice were positive, but no study exceeded 26 points on the CSAT scale to be considered high quality in citizen science. Conclusions: Citizen science can be a promising approach within the field of nursing. There is a need to increase individual participation to fully realize the potential bidirectional benefits. It is imperative to establish a common theoretical framework and continue working on the development of this methodology within nursing.

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Section: Discussionsupporting

confidence: 88%

Citizen Science Studies in Nursing: A Systematic Review

Torró-Pons,

Saus-Ortega,

Ballestar-Tarín

2024

Nursing Reports

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“…According to our research and knowledge, we are not aware of any digital application that implements our project topic and offers the developed functionalities across several different RDs. Currently existing CS systems are placed in other fields of human medicine [ 10 ]. Regardless of the CS character, disease-specific apps can be found [ 35 – 41 ], apps and websites that refer people to health care providers [ 42 , 43 ], apps for sharing experiences and networking [ 44 , 45 ], a symptom checker [ 46 ], information and support apps for RD-affected persons [ 47 , 48 ].…”

Section: Discussionmentioning

confidence: 99%

“…The project is funded by the Federal Ministry of Education and Research in Germany (BMBF) and supported by the Alliance of Chronic Diseases (ACHSE e.V.) [ 9 , 10 ]. In SelEe, scientists and citizens aim to investigate RDs together by collecting data using a digital application.…”

Section: Introductionmentioning

confidence: 99%

Identifying project topics and requirements in a citizen science project in rare diseases: a participative study

Neff

Storf

Vasseur

et al. 2022

Orphanet J Rare Dis

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Background Due to their low prevalence (< 5 in 10,000), rare diseases are an important area of research, with the active participation of those affected being a key factor. In the Citizen Science project “SelEe” (Researching rare diseases in a citizen science approach), citizens collaborate with researchers using a digital application, developed as part of the project together with those affected, to answer research questions on rare diseases. The aim of this study was to define the rare diseases to be considered, the project topics and the initial requirements for the implementation in a digital application. Methods To address our research questions, we took several steps to engage citizens, especially those affected by rare diseases. This approach included the following methods: pre- and post-survey (questionnaire), two workshops with focus group discussion and a requirements analysis workshop (with user stories). Results In the pre-survey, citizens suggested 45 different rare diseases and many different disease groups to be considered in the project. Two main project topics (A) “Patient-guided documentation and data collection” (20 votes) and (B) “Exchange of experience and networking” (13 votes) were identified as priorities in the workshops and ranked in the post-survey. The requirements workshop resulted in ten user stories and six initial requirements to be implemented in the digital application. Conclusion Qualitative, citizen science research can be used to collectively identify stakeholder needs, project topics and requirements for a digital application in specific areas, such as rare diseases.

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“…The project SelEe ('Researching rare diseases in a citizen science approach') is a citizen science project on RDs in Germany by the Institute for Information Systems at Hof University of Applied Sciences and the Institute of Medical Informatics at Goethe University Frankfurt. It is supported by the Alliance of Chronic Rare Diseases, representing the non-profit alliance of RD patient organizations in Germany [11]. In SelEe, citizens, especially patients, are involved in the project and determine the research questions and topics of the project from the beginning to support the data processing and provision of the research results in the further course of the project.…”

Section: Introductionmentioning

confidence: 99%

SelEe- Rare diseases citizen science research

Neff¹,

Schaaf²,

Scheidt³

et al. 2023

Proceedings of Austrian Citizen Science Conference 2022 — PoS(ACSC2022)

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The citizen science project SelEe ('Researching rare diseases in a citizen science approach') aims to research rare diseases in collaboration with citizens by using digital applications. SelEe adopts a participatory approach as it is important to recognise the active role of patients and their families as informed partners. They are often the experts on their own disease. Similarly, involving citizens beyond those affected can increase the visibility and understanding of rare diseases. Citizens can contribute their strengths, engage socially and learn new knowledge about digital apps, the diseases and their research. Engaging citizens in a continuous exchange of information as well as developing digital applications for research can make research more accessible to citizens while strengthening research and its relevance.

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Citizen Science in Human Medicine and the Use of Software-Systems: A Rapid Scoping Review

Cited by 3 publications

References 18 publications

Citizen Science Studies in Nursing: A Systematic Review

Citizen Science Studies in Nursing: A Systematic Review

Identifying project topics and requirements in a citizen science project in rare diseases: a participative study

SelEe- Rare diseases citizen science research

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