Have a personal or library account? Click to login
Adopting a Citizen Science Approach in Translational Experimental Medicine Research in Non-Alcoholic Fatty Liver Disease: A Study Protocol Cover

Adopting a Citizen Science Approach in Translational Experimental Medicine Research in Non-Alcoholic Fatty Liver Disease: A Study Protocol

Open Access
|Oct 2023

References

  1. 1Bellentani, S. 2017. The epidemiology of non-alcoholic fatty liver disease. Liver International, 37(S1): 8184. DOI: 10.1111/liv.13299
  2. 2Blackburn, S, McLachlan, S, Jowett, S, Kinghorn, P, Gill, P, Higginbottom, A, Rhodes, C, Stevenson, F and Jinks, C. 2018. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study. Research Involvement and Engagement, 4(1): 16. DOI: 10.1186/s40900-018-0100-8
  3. 3Borda, A, Gray, K and Downie, L. 2019. Citizen Science Models in Health Research: an Australian Commentary. Online Journal of Public Health Informatics, 11(3): e23. DOI: 10.5210/ojphi.v11i3.10358
  4. 4Borda, A, Gray, K and Fu, Y. 2020. Research data management in health and biomedical citizen science: practices and prospects. JAMIA Open, 3(1): 113125. DOI: 10.1093/jamiaopen/ooz052
  5. 5Braun, V and Clarke, V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2): 77101. DOI: 10.1191/1478088706qp063oa
  6. 6Buysse, DJ, Reynolds, CF, Monk, TH, Berman, SR and Kupfer, DJ. 1989. The Pittsburgh sleep quality index: A new instrument for psychiatric practice and research. Psychiatry Research, 28(2): 193213. DOI: 10.1016/0165-1781(89)90047-4
  7. 7Carroll, P, Dervan, A, Maher, A, McCarthy, C, Woods, I, Kavanagh, R, Beirne, C, Harte, G, O’Flynn, D, Murphy, P, Quinlan, J, Holton, A, Casey, S, Moriarty, F, Smith, E, O’Brien, F and Flood, M. 2021. Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol [version 2; peer review: 2 approved]. HRB Open Research, 4: 61. DOI: 10.12688/hrbopenres.13303.2
  8. 8Chrisinger, BW, Ramos, A, Shaykis, F, Martinez, T, Banchoff, AW, Winter, SJ and King, AC. 2018. Leveraging Citizen Science for Healthier Food Environments: A Pilot Study to Evaluate Corner Stores in Camden, New Jersey. Frontiers in Public Health, 6: 89. DOI: 10.3389/fpubh.2018.00089
  9. 9COPE. 2019. COPE Discussion Document: Authorship. Committee on Publication Ethics, 2019. DOI: 10.24318/cope.2019.3.3
  10. 10Craig, CL, Marshall, AL, Sjostrom, M, Bauman, AE, Booth, ML, Ainworth, BE, Pratt, M, Ekelund, U, Yngve, A, Sallis, JF and Oja, P. 2003. International Physical Activity Questionnaire: 12-Country Reliability and Validity. Medicine & Science in Sports & Exercise, 35(8): 13811395. DOI: 10.1249/01.MSS.0000078924.61453.FB
  11. 11De Moor, T, Rijpma, A and Prats López, M. 2019. Dynamics of engagement in citizen science: results from the “yes, i do!” project. Citizen Science: Theory and Practice, 4(1): 38. DOI: 10.5334/cstp.212
  12. 12Den Broeder, L, Devilee, J, Van Oers, H, Schuit, AJ and Wagemakers, A. 2018. Citizen Science for public health. Health Promotion International, 33(3): 505514. DOI: 10.1093/heapro/daw086
  13. 13Eitzel, MV, Cappadonna, JL, Santos-Lang, C, Duerr, RE, Virapongse, A, West, SE, Kyba, CCM, Bowser, A, Cooper, CB, Sforzi, A, Metcalfe, AN, Harris, ES, Thiel, M, Haklay, M, Ponciano, L, Roche, J, Ceccaroni, L, Shilling, FM, Dörler, D, Heigl, F, Kiessling, T, Davis, BY and Jiang, Q. 2017. Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice, 2(1): 1. DOI: 10.5334/cstp.96
  14. 14Eleta, I, Clavell, GG, Righi, V and Balestrini, M. 2019. The promise of participation and decision-making power in citizen science. Citizen Science: Theory and Practice, 4(1): 8. DOI: 10.5334/cstp.171
  15. 15Esteban, JP and Dinani, A. 2020. Lifestyle interventions beyond diet and exercise for patients with nonalcoholic fatty liver disease. Gastroenterology & Hepatology, 16(3): 119130.
  16. 16Follett, R and Strezov, V. 2015. An Analysis of Citizen Science Based Research: Usage and Publication Patterns. PLOS ONE, 10(11): e0143687. DOI: 10.1371/journal.pone.0143687
  17. 17Ghevariya, V, Sandar, N, Patel, K, Ghevariya, N, Shah, R, Aron, J and Anand, S. 2014. Knowing What’s Out There: Awareness of Non-Alcoholic Fatty Liver Disease. Frontiers in Medicine, 1: 4. DOI: 10.3389/fmed.2014.00004
  18. 18Groot, B and Abma, T. 2022. Ethics framework for citizen science and public and patient participation in research. BMC Medical Ethics, 23(1): 23. DOI: 10.1186/s12910-022-00761-4
  19. 19Haklay, 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, LA, Wagenknecht, K, Motion, A, Sforzi, A, Riemenschneider, D, Dorler, D, Heigl, F, Schaefer, T, Lindner, A, Weißpflug, M, Mačiulienė, M and Vohland, K, 2021. Contours of citizen science: a vignette study. Royal Society Open Science, 8(8): 202108. DOI: 10.1098/rsos.202108
  20. 20Hartmann-Boyce, J, Johns, DJ, Jebb, SA, Summerbell, C, Aveyard, P and Behavioural Weight Management Review Group. 2014. Behavioural weight management programmes for adults assessed by trials conducted in everyday contexts: systematic review and meta-analysis. Obesity Reviews, 15(11): 920932. DOI: 10.1111/obr.12220
  21. 21Heigl, F, Kieslinger, B, Paul, KT, Uhlik, J, Frigerio, D and Dörler, D. 2020. Co-creating and implementing quality criteria for citizen science. Citizen Science: Theory and Practice, 5(1): 23. DOI: 10.5334/cstp.294
  22. 22Heyen, NB, 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
  23. 23International Committee of Medical Journal Editors. 2023. Defining the Role of Authors and Contributors. 2023. Available at https://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html.
  24. 24Irwin, A. 2018. No PhDs needed: How citizen science is transforming research. Nature, 562(7728): 480482. DOI: 10.1038/d41586-018-07106-5
  25. 25Jebb, SA, Ahern, AL, Olson, AD, Aston, LM, Holzapfel, C, Stoll, J, Amann-Gassner, U, Simpson, AE, Fuller, NR, Pearson, S, Lau, NS, Mander, AP, Hauner, H and Caterson, ID, 2011. Primary care referral to a commercial provider for weight loss treatment versus standard care: a randomised controlled trial. The Lancet, 378(9801): 14851492. DOI: 10.1016/S0140-6736(11)61344-5
  26. 26Kaye, J, Curren, L, Anderson, N, Edwards, K, Fullerton, SM, Kanellopoulou, N, Lund, D, MacArthur, DG, Mascalzoni, D, Shepherd, J, Taylor, PL, Terry, SF and Winter, SF. 2012. From patients to partners: participant-centric initiatives in biomedical research. Nature Reviews Genetics, 13(5): 371376. DOI: 10.1038/nrg3218
  27. 27Kullenberg, C and Kasperowski, D. 2016. What Is Citizen Science? – A Scientometric Meta-Analysis. PLOS ONE, 11(1): e0147152. DOI: 10.1371/journal.pone.0147152
  28. 28Kumar, R, Priyadarshi, RN and Anand, U. 2020. Non-alcoholic fatty liver disease: growing burden, adverse outcomes and associations. Journal of Clinical and Translational Hepatology, 8(1): 7686. DOI: 10.14218/JCTH.2019.00051
  29. 29National Institute for Health Research. 2018. National Standards for public involvement in research. London. Available at https://www.invo.org.uk/wp-content/uploads/2019/02/71110_A4_Public_Involvement_Standards_v4_WEB.pdf.
  30. 30National Institute for Health Research. 2020. A brief guide to public involvement in funding applications. Leeds, England. Available at https://www.nihr.ac.uk/documents/a-brief-guide-to-public-involvement-in-funding-applications/24162#Writing_your_grant_application.
  31. 31Nutbeam, D. 2008. The evolving concept of health literacy. Social Science & Medicine, 67(12): 20722078. DOI: 10.1016/j.socscimed.2008.09.050
  32. 32Peter, M, Diekötter, T, Höffler, T and Kremer, K. 2021. Biodiversity citizen science: Outcomes for the participating citizens. People and Nature, 3(2): 294311. DOI: 10.1002/pan3.10193
  33. 33Petersen, C, Austin, RR, Backonja, U, Campos, H, Chung, AE, Hekler, EB, Hsueh, P-YS, Kim, KK, Pho, A, Salmi, L, Solomonides, A and Valdez, RS. 2020. Citizen science to further precision medicine: from vision to implementation. JAMIA Open, 3(1): 28. DOI: 10.1093/jamiaopen/ooz060
  34. 34Pocock, MJO, Tweddle, JC, Savage, J, Robinson, LD and Roy, HE. 2017. The diversity and evolution of ecological and environmental citizen science. PLOS ONE, 12(4): e0172579. DOI: 10.1371/journal.pone.0172579
  35. 35Prictor, M, Lewis, MA, Newson, AJ, Haas, M, Baba, S, Kim, H, Kokado, M, Minari, J, Molnár-Gábor, F, Yamamoto, B, Kaye, J and Teare, HJA. 2020. Dynamic Consent: An Evaluation and Reporting Framework. Journal of Empirical Research on Human Research Ethics, 15(3): 175186. DOI: 10.1177/1556264619887073.
  36. 36Rosas, LG, Rodriguez Espinosa, P, Montes Jimenez, F and King, AC. 2022. The Role of Citizen Science in Promoting Health Equity. Annual Review of Public Health, 43(1): 215234. DOI: 10.1146/annurev-publhealth-090419-102856
  37. 37Rüfenacht, S, Woods, T, Agnello, G, Gold, M, Hummer, P, Land-Zandstra, A and Sieber, A. 2021. Communication and Dissemination in Citizen Science. In: Vohland, K, Land-Zandstra, A, Ceccaroni, L, Lemmens, R, Perelló, J, Ponti, M, Samson, R and Wagenknecht, K (eds.), The Science of Citizen Science. Cham: Springer International Publishing. pp. 475494. DOI: 10.1007/978-3-030-58278-4_24
  38. 38Shirk, JL, Ballard, HL, Wilderman, CC, Phillips, T, Wiggins, A, Jordan, R, McCallie, E, Minarchek, M, Lewenstein, BV, Krasny, ME and Bonney, R. 2012. Public Participation in Scientific Research. Ecology and Society, 17(2): 29. DOI: 10.5751/ES-04705-170229
  39. 39Singh, A, Dhaliwal, AS, Singh, S, Kumar, A, Lopez, R, Gupta, M, Noureddin, M, Carey, W, McCullough, A and Alkhouri, N. 2020. Awareness of Nonalcoholic Fatty Liver Disease Is Increasing but Remains Very Low in a Representative US Cohort. Digestive Diseases and Sciences, 65(4): 978986. DOI: 10.1007/s10620-019-05700-9
  40. 40Socientize Consortium. 2013. Green paper on Citizen Science. Citizen Science for Europe: Towards a society of empowered citizens and enhanced research. Brussels: European Commission. Available at https://ec.europa.eu/newsroom/dae/document.cfm?doc_id=4122.
  41. 41Strobl, B, Etter, S, van Meerveld, HJI and Seibert, J. 2020. Training citizen scientists through an online game developed for data quality control. Geoscience Communication, 3(1): 109126. DOI: 10.5194/gc-3-109-2020
  42. 42Tauginienė, L, Butkevičienė, E, Vohland, K, Heinisch, B, Daskolia, M, Suškevičs, M, Portela, M, Balázs, B and Prūse, B. 2020. Citizen science in the social sciences and humanities: the power of interdisciplinarity. Palgrave Communications, 6(1): 89. DOI: 10.1057/s41599-020-0471-y
  43. 43Tavaglione, F, De Vincentis, A, Bruni, V, Gallo, IF, Carotti, S, Tuccinardi, D, Spagnolo, G, Ciociola, E, Mancina, RM, Jamialahmadi, O, D’Alessio, R, Bottazzi, B, Manfrini, S, Picardi, A, Perrone, G, Pozzilli, P, Caricato, M, Vespasiani-Gentilucci, U and Romeo, S. 2022. Accuracy of controlled attenuation parameter for assessing liver steatosis in individuals with morbid obesity before bariatric surgery. Liver International, 42(2): 374383. DOI: 10.1111/liv.15127
  44. 44Trejo, M, Canfield, I, Brooks, WB, Pearlman, A and Guerrini, C. 2021. “A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight. Citizen Science: Theory and Practice, 6(1): 15. DOI: 10.5334/cstp.360
  45. 45Tsinaraki, C and Schade, S. 2016. Survey report: Data management in Citizen Science projects. Luxembourg: Joint Research Centre, European Commission. Publications Office of the European Union. Available at https://data.europa.eu/doi/10.2788/539115.
  46. 46US Institute of Medicine. 2004. Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press (US). Available at https://www.ncbi.nlm.nih.gov/books/NBK216033/.
  47. 47Walker, DW, Smigaj, M and Tani, M. 2021. The benefits and negative impacts of citizen science applications to water as experienced by participants and communities. WIREs Water, 8(1): e1488. DOI: 10.1002/wat2.1488
  48. 48Wieland, AC, Mettler, P, McDermott, MT, Crane, LA, Cicutto, LC and Bambha, KM. 2015. Low Awareness of Nonalcoholic Fatty Liver Disease Among Patients at High Metabolic Risk, Journal of Clinical Gastroenterology, 49(1): e6e10. DOI: 10.1097/MCG.0000000000000075
  49. 49Wiggins, A and Wilbanks, J. 2019. The Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics, 19(8): 314. DOI: 10.1080/15265161.2019.1619859
  50. 50Wong, VW-S, Chan, W-K, Chitturi, S, Chawla, Y, Dan, YY, Duseja, A, Fan, J, Goh, K-L, Hamaguchi, M, Hashimoto, E, Kim, SU, Lesmana, LA, Lin, Y-C, Liu, C-J, Ni, Y-H, Sollano, J, Wong, SK-H, Wong, GL-H, Chan, HL-Y and Farrell, G. 2018. Asia–Pacific Working Party on Non-alcoholic Fatty Liver Disease guidelines 2017—Part 1: Definition, risk factors and assessment. Journal of Gastroenterology and Hepatology, 33(1): 7085. DOI: 10.1111/jgh.13857
  51. 51World Health Organization. 2015. Health literacy toolkit for low- and middle-income countries: A series of information sheets to empower communities and strengthen health systems. Available at https://apps.who.int/iris/handle/10665/205244.
  52. 52Ye, Q, Zou, B, Yeo, YH, Li, J, Huang, DQ, Wu, Y, Yang, H, Liu, C, Kam, LY, Tan, XXE, Chien, N, Trinh, S, Henry, L, Stave, CD, Hosaka, T, Cheung, RC and Nguyen, MH. 2020. Global prevalence, incidence, and outcomes of non-obese or lean non-alcoholic fatty liver disease: a systematic review and meta-analysis. The Lancet Gastroenterology & Hepatology, 5(8): 739752. DOI: 10.1016/S2468-1253(20)30077-7
  53. 53Younossi, ZM, Koenig, AB, Abdelatif, D, Fazel, Y, Henry, L and Wymer, M. 2016. Global epidemiology of nonalcoholic fatty liver disease—Meta-analytic assessment of prevalence, incidence, and outcomes. Hepatology, 64(1): 7384. DOI: 10.1002/hep.28431
  54. 54Zarghamravanbakhsh, P, Frenkel, M and Poretsky, L. 2021. Metabolic causes and consequences of nonalcoholic fatty liver disease (NAFLD). Metabolism Open, 12: 100149. DOI: 10.1016/j.metop.2021.100149
DOI: https://doi.org/10.5334/cstp.555 | Journal eISSN: 2057-4991
Language: English
Submitted on: Aug 22, 2022
Accepted on: Aug 22, 2023
Published on: Oct 16, 2023
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2023 Syed Ghulam Sarwar Shah, Yolanda Barrado-Martín, Thomas Marjot, Jeremy W. Tomlinson, Vasiliki Kiparoglou, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.