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Citizen Science for Health: An International Survey on Its Characteristics and Enabling Factors Cover

Citizen Science for Health: An International Survey on Its Characteristics and Enabling Factors

Citizen Science: Theory and Practice
Volume 9 (2024): Issue 1
By: Gaston Remmers,  Bastian Greshake Tzovaras,  Alexandra Albert,  Jef Van Laer,  Sabine Wildevuur,  Martijn De Groot,  Lea den Broeder,  Isabelle Bonhoure,  Joana Magalhães,  Sara Mas Assens,  Enric García Torrents,  Baris Imre and  Eugenia Covernton  
Open Access
|Sep 2024

References

  1. 1Abma, T. and Broerse, J. (2010). Patient participation as dialogue: setting research agendas. Health Expectations. 13:2, pp. 160–173. DOI: 10.1111/j.1369-7625.2009.00549.x
    Back to article
  2. 2Arnstein, S. (1969). A Ladder of Community Participation. Journal of the American Institute of Planners, 35, 216–224. DOI: 10.1080/01944366908977225
    Back to article
  3. 3Auerbach, J., Barthelmess, E., Cavalier, D., et al., (2019). The problem with delineating narrow criteria for citizen science. PNAS. 116:31, pp. 15336–15337. DOI: 10.1073/pnas.1909278116
    Back to article
  4. 4Baines, R. L., and Regan de Bere, S. (2018). Optimizing patient and public involvement (PPI): Identifying its “essential” and “desirable” principles using a systematic review and modified Delphi methodology. Health Expectations. 21:1, pp. 327–335. DOI: 10.1111/hex.12618
    Back to article
  5. 5Ballantyne A. (2019). Adjusting the focus: A public health ethics approach to data research. Bioethics. 33:3, pp. 357–366. DOI: 10.1111/bioe.12551
    Back to article
  6. 6Beauchamp, T. and Childress, J. (2001). Principles of Biomedical Ethics, 5th ed., Oxford University Press, New York.
    Back to article
  7. 7Bonhoure, I., Cigarini, A., Vicens, J. et al., (2023). Reformulating computational social science with citizen social science: the case of a community-based mental health care research. Humanities and Social Sciences Communications. 10, 81. DOI: 10.1057/s41599-023-01577-2
    Back to article
  8. 8Bonney, R., Cooper, C., Dickinson, J., et al. (2009). Citizen Science: A Developing Tool for Expanding Science Knowledge and Scientific Literacy, BioScience 59:11, pp. 977–984. DOI: 10.1525/bio.2009.59.11.9
    Back to article
  9. 9Borda, A., Gray, K., and Downie, L. (2019). Citizen Science Models in Health Research: an Australian Commentary. Online Journal of Public Health Information. 3:1:11:3, e23. DOI: 10.5210/ojphi.v11i3.10358
    Back to article
  10. 10Canas, L., Sudre, C., Capdevila Pujol, J. et al. (2021). Early detection of COVID-19 in the UK using self-reported symptoms: a large-scale, prospective, epidemiological surveillance study. Lancet Digital Health. 3:9, e587–e598. DOI: 10.1016/S2589-7500(21)00131-X
    Back to article
  11. 11Carlton, J., Peasgood, T., Mukuria, C., Johnson, J., Ogden, M., & Tovey, W. (2022). The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB). Journal of Patient-Reported Outcomes, 6:1, pp. 35. DOI: 10.1186/s41687-022-00437-y
    Back to article
  12. 12Ciasullo, M., Carli, M., Lim, W. and Palumbo, R. (2022). “An open innovation approach to co-produce scientific knowledge: an examination of citizen science in the healthcare ecosystem”, European Journal of Innovation Management, 25:6, pp. 365–392. DOI: 10.1108/EJIM-02-2021-0109
    Back to article
  13. 13Cigarini, A., Vicens, J., Duch, J. et al., (2018). Quantitative account of social interactions in a mental health care ecosystem: cooperation, trust and collective action. Scientific Reports 8, 3794. DOI: 10.1038/s41598-018-21900-1
    Back to article
  14. 14Den Broeder, L., Devilee, J., Van Oers, H., Jantine Schuit, A. and Wagemakers, A. (2018). Citizen Science for public health, Health Promotion International, 33: 3, pp. 505–514. DOI: 10.1093/heapro/daw086
    Back to article
  15. 15Den Broeder, L., Lemmens, L., Uysal, S. et al., (2017). Public health citizen science; perceived impacts on citizen scientists: A case study in a low-income neighbourhood in the Netherlands. Citizen Science: Theory and Practice. 2:1:7, pp. 1–17. DOI: 10.5334/cstp.89
    Back to article
  16. 16Eitzel, M., Cappadonna, J., Santos-Lang, C., Duerr, R., Virapongse, A., West, S., Kyba, C., Bowser, A., Cooper, C., Sforzi, A., Metcalfe, A., Harris, E., Thiel, M., Haklay, M., Ponciano, L., Roche, J., Ceccaroni, L., Shilling, F., Dörler, D., Heigl, F., Kiessling, T., Davis, B. and Jiang, Q. (2017). Citizen science terminology matters: Exploring key terms. Citizen Science: Theory and Practice. 2:1, p. 1. DOI: 10.5334/cstp.96
    Back to article
  17. 17Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, M. (2012). Shared decision making: a model for clinical practice. Journal of General Internal Medicine. 27:10, pp. 1361–7. DOI: 10.1007/s11606-012-2077-6
    Back to article
  18. 18English, P., Richardson, M. and Garzon-Galvis, C. (2018). From Crowdsourcing to Extreme Citizen Science: Participatory Research for Environmental Health. Annual Review of Public Health. 39, pp. 335–50. DOI: 10.1146/annurev-publhealth-040617-013702
    Back to article
  19. 19Fiske, A., Del Savio, L., Prainsack, B., Buyx, A. (2019). Conceptual and Ethical Considerations for Citizen Science in Biomedicine. In: Heyen, N., Dickel, S., Brüninghaus, A. (eds) Personal Health Science. Öffentliche Wissenschaft und gesellschaftlicher Wandel. Springer VS, Wiesbaden. DOI: 10.1007/978-3-658-16428-7_10
    Back to article
  20. 20Frank, A. (2013). The Wounded Storyteller: Body, Illness & Ethics. Chicago and London: The University of Chicago Press.
    Back to article
  21. 21Green, G. and Johns, T. (2019). Exploring the relationship (and Power Dynamic) between researchers and public partners working together in applied health research teams. Frontiers in Sociology. 4:20. DOI: 10.3389/fsoc.2019.00020
    Back to article
  22. 22Greenhalgh, T. (2020). Will COVID-19 be evidence-based medicine’s nemesis? PLoS Medicine. 17:6, e1003266. DOI: 10.1371/journal.pmed.1003266
    Back to article
  23. 23Groot, B. and Abma, T. (2022). Ethics framework for citizen science and public and patient participation in research. BMC Medical Ethics. 23:23. DOI: 10.1186/s12910-022-00761-4
    Back to article
  24. 24Guerrini, C., Kempner, J., Rasmussen, L. and Wexler, A. (2022). Diverse, emergent, disruptive: Perspectives on and developments in biomedical citizen science. Citizen Science: Theory and Practice. 7:1:36, pp. 1–7. DOI: 10.5334/cstp.598
    Back to article
  25. 25Haeusermann, T., Greshake, B., Blasimme, A., Irdam, D., Richards, M. and Vayena, E. (2017). Open sharing of genomic data: Who does it and why? PLoS ONE. 12:5, e0177158. DOI: 10.1371/journal.pone.0177158
    Back to article
  26. 26Haklay, M. (2013). Citizen science and volunteered geographic information: overview and typology of participation. In: Sui, D., Elwood, S., Goodchild, M. (eds) Crowdsourcing Geographic Knowledge: Volunteered Geographic Information (VGI) in Theory and Practice Berlin, Germany: Springer. pp. 105–122. DOI: 10.1007/978-94-007-4587-2_7
    Back to article
  27. 27Haklay, M., Dörler, D., Heigl, F, Manzoni, M., Hecker, S. and Vohland, K. (2021a). What is Citizen Science? The challenges of definition. In: K. Vohland et al. (eds) The Science of Citizen Science. Springer pp. 13–33. DOI: 10.1007/978-3-030-58278-4
    Back to article
  28. 28Haklay, M., Fraisl, D., Greshake Tzovaras, B., Hecker, S., Gold, M., Hager, G., Ceccaroni, L., Kieslinger, B., Wehn, U., Woods, S., Nold, C., Balázs, B., Mazzonetto, M., Ruefenacht, S., Shanley, L., Wagenknecht, K., Motion, A., Sforzi, A., Riemenschneider, D., et al. (2021b). Contours of citizen science: a vignette study. Royal Society Open Science. 8202108202108. DOI: 10.1098/rsos.202108
    Back to article
  29. 29Hammel, G., Woll, S., Baumann, M., Scherz, C., Maia, M., Behrisch, B., Borgmann, S., Eichinger, M., Gardecki, J., Heyen, N., Icks, A., Pobiruchin, M. and Weschke, S. (2021). Citizen science approaches in medical and health research: Selected terms with focus on the degree of participation. TATuP [Internet]. Available from: https://www.tatup.de/index.php/tatup/article/view/6933
    Back to article
  30. 30Heyen, N., Gardecki, J., Eidt-Koch, D., Schlangen, M., Pauly, S., Eickmeier, O., Wagner, T., and Bratan, T. (2022). Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers. Journal of Participatory Research Methods. 3:1. DOI: 10.35844/001c.35634
    Back to article
  31. 31Hoffman, S. (2015). Citizen Science: The law and ethics of public access to medical big data. Heinonline. 30 Berkeley Tech. L.J. 1741. DOI: 10.15779/Z385Z78
    Back to article
  32. 32Iaccarino, M. (2001). Science and ethics. EMBO Rep. 2:9, pp. 747–50. DOI: 10.1093/embo-reports/kve191
    Back to article
  33. 33ICPHR. (2013). Position paper 1: what is participatory health research. Version May 2013, Berlin.
    Back to article
  34. 34INVOLVE (2017). Starting Out–essential information for members of the public who are thinking about getting started in involvement in research. Accessed on 13 March 2024. https://www.invo.org.uk/wp-content/uploads/2018/01/Induction-public-v3.pdf
    Back to article
  35. 35Jacobs, N., and Tinnerholm Ljungberg, H. (2021). How ethics travels: The international development of research ethics committees in the late twentieth century, European Journal for the History of Medicine and Health. 78:2, pp. 257–265. DOI: 10.1163/26667711-20210001
    Back to article
  36. 36King, A., Winter, S., Chrisinger, B., Hua, J. and Banchoff, A. (2019). Maximising the promise of citizen science to advance health and prevent disease. Preventive Medicine 119, pp. 44–47. DOI: 10.1016/j.ypmed.2018.12.016
    Back to article
  37. 37Koepnick, B., Flatten, J., Husain, T., Ford, A., Silva, D., Bick, M., Bauer, A., et al. (2019). De novo protein design by citizen scientists. Nature. 570, pp. 390–394. DOI: 10.1038/s41586-019-1274-4
    Back to article
  38. 38Lewis, D. (2022). Barriers to Citizen Science and Dissemination of Knowledge in Healthcare. Citizen Science: Theory and Practice. 7:1, p. 40. DOI: 10.5334/cstp.511
    Back to article
  39. 39Lewis, D. and Leibrand, S. (2016). #OpenAPS Community. Real-world use of open source artificial pancreas systems. Journal of Diabetes Science and Technology 10:6, p. 1411. DOI: 10.1177/1932296816665635
    Back to article
  40. 40Magalhães, J., Matozinhos, K., Navalhas, I., Luís, C., Pelacho, M., Leguina, L., Elorza, A., Lacunza, I., Tola, E. and Arias, R. (2023). Guide of science communication in citizen science projects and citizen science journalism (Deliverable 5.3). Available at Zenodo. DOI: 10.5281/zenodo.7752525
    Back to article
  41. 41McNair L. (2022). Ethical and regulatory oversight of clinical research: The role of the Institutional Review Board. Experimental Biology and Medicine. 247(7): 561–566. DOI: 10.1177/15353702221078216
    Back to article
  42. 42National Institute of Health (NIHR). (2021). Briefing notes for researchers – public involvement in NHS, health and social care research. Accessed on 13 March 2024 at: https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
    Back to article
  43. 43Ogilvie, D., Adams, J., Bauman, A., Gregg, E., Panter, J., Siegel, K., Wareham, N. and White, M. (2020). Using natural experimental studies to guide public health action: turning the evidence-based medicine paradigm on its head. Journal of Epidemiology and Community Health. 74:2, pp. 203–208. DOI: 10.1136/jech-2019-213085
    Back to article
  44. 44Patient-Centered Outcomes Research Institute (PCORI). (2018). The value of engagement. Online available via: https://www.pcori.org/engagement/value-engagement
    Back to article
  45. 45Patient Innovation. (2021). Patient innovation. Sharing solutions, improving lives. Online available via: https://patient-innovation.com/
    Back to article
  46. 46Perelló, J., Cigarini, A., Vicens, J., Bonhourem, I., Rojas-Rueda, D., Nieuwenhuijsenm, M., Cirach, M., Daher, C., Targa, J. and Ripoll, A. (2021). Large-scale citizen science provides high-resolution nitrogen dioxide values and health impact while enhancing community knowledge and collective action. Science of the Total Environment. 789:147750. DOI: 10.1016/j.scitotenv.2021.147750
    Back to article
  47. 47Rasmussen, L.M. and Cooper, C. (2019). Citizen Science Ethics. Citizen Science: Theory and Practice. 4:1, p. 5. DOI: 10.5334/cstp.235
    Back to article
  48. 48Reijers, W., Wright, D., Brey, P., Weber, K., Rodrigues, R., O’Sullivan, D. and Gordijn, B. (2018). Methods for Practising Ethics in Research and Innovation: A Literature Review, Critical Analysis and Recommendations. Science and Engineering Ethics. 24:5, pp. 1437–1481. DOI: 10.1007/s11948-017-9961-8
    Back to article
  49. 49Remmers, G., den Broeder, L., Wildevuur, S. and de Groot, M. (2020). Enhancing Health through Citizen Science. Report of an interactive workshop Citizen Science for Health at ECSA 2020. pp. 19. Accessible via: https://mdog.nl/wp-content/uploads/2023/02/2020-10-19-Report-on-ECSA-CS4H-survey-DEF.pdf
    Back to article
  50. 50Remmers, G., Hermann, J., Siebrand, E. and van Leersum, C. (2023). Mind the Relationship: A Multi-Layered Ethical Framework for Citizen Science in Health. Etica & Politica/Ethics & Politics. XXV: 2, pp. 171–196.
    Back to article
  51. 51Resnik, D. (2019). Citizen Scientists as Human Subjects: Ethical Issues. Citizen Science: Theory and Practice, 4:1:11, pp. 1–7, DOI: 10.5334/cstp.150
    Back to article
  52. 52Resnik, D., Elliott, K. and Miller, A. (2015). A framework for addressing ethical issues in citizen science. Environmental Science & Policy 54: pp. 475–481. DOI: 10.1016/j.envsci.2015.05.008
    Back to article
  53. 53Rice, T. (2008). The historical, ethical, and legal background of human-subjects research. Respiratory Care. 53: 10, pp. 1325–9. PMID: 18811995.
    Back to article
  54. 54Richards, D., Jordan, I., Strain, K. and Press, Z. (2018). Patient partner compensation in research and health care: the patient perspective on why and how. Patient Experience Journal. 5:3, pp. 6–12. DOI: 10.35680/2372-0247.1334
    Back to article
  55. 55Rosas, L., Rodriguez Espinosa, P., Montes Jimenez, F. and King, A. (2022). The Role of Citizen Science in Promoting Health Equity. Annual Review of Public Health 43:1, pp. 215–234. DOI: 10.1146/annurev-publhealth-090419-102856
    Back to article
  56. 56Rouleau, G., Bélisle-Pipon, J.-C., Birko, S., Karazivan, P., Fernandez, N., Bilodeau, K., Chao, Y., de Pokomandy, A., Foley, V., Gagnon, B., Guerra, S., Khanji, C., Lamoureux-Lamarche, C., Lebouché, B., Lunghi, C., Menear, M., Riverin, B., and Rodrigue, C. (2018). Early career researchers’ perspectives and roles in patient-oriented research. Research Involvement and Engagement, 4:1, pp. 1–15. DOI: 10.1186/s40900-018-0117-z
    Back to article
  57. 57Rowbotham, S., McKinnon, M., Leach, J., Lamberts, R. and Hawe, P. (2019). Does citizen science have the capacity to transform population health science? Critical Public Health, 29:1, pp. 118–128, DOI: 10.1080/09581596.2017.1395393
    Back to article
  58. 58Senabre Hidalgo, E., Perelló, J., Becker, F., Bonhoure, I., Legris, M., Cigarini, A. (2021). Participation and Co-creation in Citizen Science. In: Vohland, K., et al. The Science of Citizen Science. Springer, Cham. DOI: 10.1007/978-3-030-58278-4_11
    Back to article
  59. 59Senabre Hidalgo, E., Ball, M., Opoix, M. and Greshake Tzovaras, B. (2022). Shared motivations, goals and values in the practice of personal science: a community perspective on self-tracking for empirical knowledge. Humanities and Social Sciences Communications 9: 182. DOI: 10.1057/s41599-022-01199-0
    Back to article
  60. 60Shirk, J., Ballard, H., Wilderman, C., Phillips, T., Wiggins, A., Jordan, R., McCallie, E., Minarchek, M., Lewenstein, B., Krasny, M. and Bonney, R. (2012). Public participation in scientific research: a framework for deliberate design. Ecology and Society 17:2, pp. 29. DOI: 10.5751/ES-04705-170229
    Back to article
  61. 61Stark, L. (2012). Behind Closed Doors: IRBs and the Making of Ethical Research. Chicago, IL: University of Chicago. DOI: 10.7208/chicago/9780226770888.001.0001
    Back to article
  62. 62Swan, M. (2012). Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem, Journal of Medical Internet Research 14: 2:e46. DOI: 10.2196/jmir.1988
    Back to article
  63. 63Turbe, A., Golumbic, Y., Farchi, T. and De – Groot, R. (2021). Investigating the potential of citizen science to respond to emerging challenges. A COVID-19 review and case study analysis report. Available at: https://zenodo.org/record/6034585#.Y9eeEHbP02z. DOI: 10.5281/zenodo.6034584
    Back to article
  64. 64Van de Bovenkamp, H., Platenkamp, C. and Bal, R. (2020). Understanding patient experiences: The powerful source of written patient stories. Health Expectations 23: pp. 717–718. DOI: 10.1111/hex.13053
    Back to article
  65. 65Vayena, E., Brownsword, R., Edwards, S., Greshake, B., Kahn, J., Ladher, N., Montgomery, J., O’Connor, D., O’Neill, O., Richards, M., Rid, A., Sheehan, M., Wicks, P., and Tasioulas, J. (2016). Research led by participants: A new social contract for a new kind of research. Journal of Medical Ethics, 42: 4, pp. 216–219. DOI: 10.1136/medethics-2015-102663
    Back to article
  66. 66Vohland, K., Land-Zandstra, A., Ceccaroni, L., et al. (eds), 2021. The Science of Citizen Science. Springer. DOI: 10.1007/978-3-030-58278-4
    Back to article
  67. 67Wallerstein, N., Duran, B., Oetzel, J. G., and Minkler, M. (Eds.). (2018). Community-Based Participatory Research for Health: Advancing Social and Health Equity. San Francisco: Jossey-Bass.
    Back to article
  68. 68Wexler, A. (2022). Mapping the Landscape of Do-it-Yourself Medicine. Citizen Science: Theory and Practice, 7:1, p. 38. DOI: 10.5334/cstp.553
    Back to article
  69. 69Wiggins, A. and Wilbanks, J. (2019). The rise of citizen science in health and biomedical research. The American Journal of Bioethics,. 19:8, pp. 3–14, DOI: 10.1080/15265161.2019.1619859
    Back to article
  70. 70WMA (1964). World Medical Association Declaration of Helsinki – ethical principles for medical research involving human subjects. Adopted by the 18 WMA General Assembly, Helsinki, Finland, June 1964, and last adapted at the 64 WMA General Assembly, Fortaleza, Brazil, October 2013. Accessed 20 June 2023 at: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/
    Back to article
  71. 71Wolf, G. and De Groot, M. (2020). A conceptual framework for personal science. Frontiers in Computer. Science 2:21. DOI: 10.3389/fcomp.2020.00021
    Back to article
  72. 72Wright, M. and Kongats, K. (Eds.). (2018). Participatory Health Research: Voices from Around the World. Springer International. DOI: 10.1007/978-3-319-92177-8
    Back to article
DOI: https://doi.org/10.5334/cstp.693 | Journal eISSN: 2057-4991
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Language: English
Submitted on: Nov 20, 2023
Accepted on: Jul 17, 2024
Published on: Sep 5, 2024
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year
Keywords:
citizen science,
health,
patients,
citizens,
health research

© 2024 Gaston Remmers, Bastian Greshake Tzovaras, Alexandra Albert, Jef Van Laer, Sabine Wildevuur, Martijn De Groot, Lea den Broeder, Isabelle Bonhoure, Joana Magalhães, Sara Mas Assens, Enric García Torrents, Baris Imre, Eugenia Covernton, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.

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