How to make your research jump off the page: Co-creation to broaden public engagement in medical research

English version

Autoři: Nina Finley ^aff001; Talia H. Swartz ^aff002; Kevin Cao ^aff003; Joseph D. Tucker ^aff001
Působiště autorů: Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom ^aff001; Division of Infectious Diseases, Icahn School of Medicine at Mount Sinai, New York, New York, United States of America ^aff002; Institute for Global Health and Infectious Diseases, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America ^aff003; Social Entrepreneurship to Spur Health (SESH) Global, Guangzhou, China ^aff004
Vyšlo v časopise: How to make your research jump off the page: Co-creation to broaden public engagement in medical research. PLoS Med 17(9): e32767. doi:10.1371/journal.pmed.1003246
Kategorie: Policy Forum
doi: https://doi.org/10.1371/journal.pmed.1003246

Souhrn

Nina Finley and co-authors discuss public involvement in planning and reporting medical research.

Klíčová slova:

Computer software – Database searching – Infographics – Medicine and health sciences – Public and occupational health – Social media – Systematic reviews – Twitter

Zdroje

1. Van Noorden R, Maher B, Nuzzo R. The top 100 papers. Nature. 2014;514:550–3. doi: 10.1038/514550a 25355343

2. Greenhalgh T, Jackson C, Shaw S, Janamian T. Achieving Research Impact Through Co-creation in Community-Based Health Services: Literature Review and Case Study. Milbank Q. 2016;94(2):392–429. Epub 2016/06/07. doi: 10.1111/1468-0009.12197 27265562; PubMed Central PMCID: PMC4911728.

3. Jamieson KH. Reconceptualizing public engagement by land-grant university scientists. Proc Natl Acad Sci U S A. 2020;117(6):2734–6. Epub 2020/02/01. doi: 10.1073/pnas.1922395117 32001506; PubMed Central PMCID: PMC7022162.

4. Tang W, Wei C, Cao B, Wu D, Li KT, Lu H, et al. Crowdsourcing to expand HIV testing among men who have sex with men in China: A closed cohort stepped wedge cluster randomized controlled trial. PLoS Med. 2018;15(8):e1002645. Epub 2018/08/29. doi: 10.1371/journal.pmed.1002645 30153265; PubMed Central PMCID: PMC6112627

5. Lavery JV. Building an evidence base for stakeholder engagement. Science. 2018;361(6402):554–6. Epub 2018/08/11. doi: 10.1126/science.aat8429 30093590.

6. Day S, Mathews A, Blumberg M, Vu T, Rennie S, Tucker JD. Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial. Clin Trials. 2020;17(3):306–13. Epub 2020/02/06. doi: 10.1177/1740774520902741 32009466; PubMed Central PMCID: PMC7255944.

7. Co-creation Twitter Open Call 2019. Available from: https://twitter.com/JosephTucker/status/1140863565576003587.

8. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. Epub 2014/02/27. doi: 10.1186/1472-6963-14-89 24568690; PubMed Central PMCID: PMC3938901.

9. Tucker JD, Day S, Tang W, Bayus B. Crowdsourcing in medical research: concepts and applications. PeerJ 2019;6:e6762.

10. Follett R, Strezov V. An Analysis of Citizen Science Based Research: Usage and Publication Patterns. PLoS ONE. 2015;10(11):e0143687. Epub 2015/11/26. doi: 10.1371/journal.pone.0143687 PubMed Central PMCID: PMC4658079. 26600041

11. Minkler M, Wallerstein N. Community based participatory research for health. San Francisco, CA: Jossey-Bass; 2003. xxxiii, 490 p. p.

12. Ozer EJ. Youth-Led Participatory Action Research: Developmental and Equity Perspectives. Adv Child Dev Behav. 2016;50:189–207. doi: 10.1016/bs.acdb.2015.11.006 26956074.

13. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38. Epub 2011/11/24. doi: 10.1093/intqhc/mzr066 22109631.

14. Tucker JD, Pan SW, Mathews A, Stein G, Bayus B, Rennie S. Crowdsourcing Contests: A Scoping Review on Ethical Concerns And Risk Mitigation Strategies. Journal of Medical Internet Research. 2018. doi: 10.2196/jmir.8226

15. WHO/TDR/SESH/SIHI. Crowdsourcing in Health and Health Research: A Practical Guide. Geneva: WHO/TDR, 2018. Available from: https://www.who.int/tdr/publications/year/2018/crowdsourcing-practical-guide/en/

16. Tucker JD, Tang W, Li H, Liu C, Fu R, Tang S, et al. Crowdsourcing Designathon: A New Model for Multisectoral Collaboration. BMJ Innovations. 2018;4:46–50. doi: 10.1136/bmjinnov-2017-000216

17. Arcia A, Suero-Tejeda N, Bales ME, Merrill JA, Yoon S, Woollen J, et al. Sometimes more is more: iterative participatory design of infographics for engagement of community members with varying levels of health literacy. J Am Med Inform Assoc. 2016;23(1):174–83. Epub 2015/07/16. doi: 10.1093/jamia/ocv079 26174865; PubMed Central PMCID: PMC5009940.

18. Wang C, Han L, Stein G, Day S, Bien-Gund C, Mathews A, et al. Crowdsourcing in Health and Medical Research: A Systematic Review. Infectious Diseases of Poverty. 2020;9:8. doi: 10.1186/s40249-020-0622-9 31959234

19. Tang W, Han L, Best J, Zhang Y, K. M, Kim J, et al. Crowdsourcing HIV Testing: A Pragmatic, Non-Inferiority Randomized Controlled Trial in China. Clinical Infectious Diseases. 2016;62:1436–42. doi: 10.1093/cid/ciw171 27129465

20. Tang W, Mao J, Liu C, Mollan K, Zhang Y, Tang S, et al. Reimagining Health Communication: A Non-Inferiority Randomized Controlled Trial of Crowdsourced intervention in China. Sex Transm Dis. 2019;46:172–8. Epub 2018/10/27. doi: 10.1097/OLQ.0000000000000930 30741854.

21. Yang F, Zhang TP, Tang W, Ong JJ, Alexander M, Forastiere L, et al. Pay-it-Forward Gonorrhea and Chlamydia Testing Among Men Who Have Sex With Men in China: A Randomized Controlled Trial. Lancet Infect Dis. 2020. doi: 10.1016/S1473-3099(20)30172-9

22. Ehteshami Bejnordi B, Veta M, Johannes van Diest P, van Ginneken B, Karssemeijer N, Litjens G, et al. Diagnostic Assessment of Deep Learning Algorithms for Detection of Lymph Node Metastases in Women With Breast Cancer. JAMA. 2017;318(22):2199–210. Epub 2017/12/14. doi: 10.1001/jama.2017.14585 29234806; PubMed Central PMCID: PMC5820737.

23. Siefert AL, Cartiera MS, Khalid AN, Nantel MC, Loose CR, Schulam PG, et al. The Yale Center for Biomedical Innovation and Technology (CBIT): One Model to Accelerate Impact From Academic Health Care Innovation. Acad Med. 2019;94(4):528–34. Epub 2018/12/07. doi: 10.1097/ACM.0000000000002542 30520807.

24. Monnard K, Benjamins MR, Hirschtick JL, Castro M, Roesch PT. Co-Creation of Knowledge: A Community-Based Approach to Multilevel Dissemination of Health Information. Health Promot Pract. 2019:1524839919865228. Epub 2019/09/01. doi: 10.1177/1524839919865228 31470741.

25. Tufte ER. The visual display of quantitative information. 2nd ed. Cheshire, Conn.: Graphics Press; 2001. 197 p. p.

26. McCrorie AD, Chen JJ, Weller R, McGlade KJ, Donnelly C. Trial of infographics in Northern Ireland (TINI): Preliminary evaluation and results of a randomized controlled trial comparing infographics with text. Cogent Med. 2018;5(1):1483591. Epub 2018/06/26. doi: 10.1080/2331205X.2018.1483591 29938211; PubMed Central PMCID: PMC6002148.

27. Olfert MD, Hagedorn RL, Barr ML, Famodu OA, Rubino JM, White JA. eB4CAST: An Evidence-Based Tool to Promote Dissemination and Implementation in Community-Based, Public Health Research. Int J Environ Res Public Health. 2018;15(10). Epub 2018/10/03. doi: 10.3390/ijerph15102142 30274249; PubMed Central PMCID: PMC6210924.

28. Thoma B, Murray H, Huang SYM, Milne WK, Martin LJ, Bond CM, et al. The impact of social media promotion with infographics and podcasts on research dissemination and readership. CJEM. 2018;20(2):300–6. Epub 2017/09/14. doi: 10.1017/cem.2017.394 28899440.

29. Ibrahim AM, Lillemoe KD, Klingensmith ME, Dimick JB. Visual Abstracts to Disseminate Research on Social Media: A Prospective, Case-control Crossover Study. Ann Surg. 2017;266(6):e46–e8. Epub 2017/04/28. doi: 10.1097/SLA.0000000000002277 28448382.

30. Buljan I, Malicki M, Wager E, Puljak L, Hren D, Kellie F, et al. No difference in knowledge obtained from infographic or plain language summary of a Cochrane systematic review: three randomized controlled trials. J Clin Epidemiol. 2018;97:86–94. Epub 2017/12/23. doi: 10.1016/j.jclinepi.2017.12.003 29269021

31. Day S, Mathews A, Blumberg M, Vu T, Mason H, Rennie S, et al. Expanding community engagement in HIV clinical trials: a pilot study using crowdsourcing. AIDS. 2020;34(8):1195–204. Epub 2020/04/15. doi: 10.1097/QAD.0000000000002534 32287062.

32. Tremblay C, Jayme B. Community knowledge co-creation through participatory video. Action Research. 2015;13:298–314.

33. Mansson L, Wiklund M, Öhberg F, Danielsson K, Sandlund M. Co-Creation with Older Adults to Improve User-Experience of a Smartphone Self-Test Application to Assess Balance Function. Int J Environ Res Public Health. 2020;17(11). Epub 2020/05/30. doi: 10.3390/ijerph17113768 32466484.

34. Fitzpatrick T, Zhou K, Cheng Y, Chan PL, Cui F, Tang W, et al. A crowdsourced intervention to promote hepatitis B and C testing among men who have sex with men in China: study protocol for a nationwide online randomized controlled trial. BMC Infect Dis. 2018;18(1):489. Epub 2018/10/01. doi: 10.1186/s12879-018-3403-3 30268114; PubMed Central PMCID: PMC6162889.

35. Dickson D. The need to increase public engagement in science 2004. Available from: https://www.scidev.net/global/communication/editorials/the-need-to-increase-public-engagement-in-science.html?__cf_chl_jschl_tk__=6fb23dda2889bed96cb04f1604216c57d6dd69ff-1592548682-0-AeDil9K3LM_B1wduRK9x1-1NbDDvkEK8GYBdWH0NSYwdizOzJ4xetI5CP6KC28iBj6dZmOZSo6yqvgoK0JEWx-DUFSdhzFpnix1B1ed4sA7sPbUkLXl8qiFah0XKLY22OMJIkommhJXqSC2KD24835cXgH7N77oCM5sbeTfTkulDp_usS-A1-viVASliZ_L5Gcs87TBRsVr54P0IecRq0XJWz5w5BMxsHqhWzmFq_L8-4XWa6GYQvxDRRbkD59uDo5mWA3L11k-JPNQl9WKRl18ZwS7ckS3TDqEWc6M86PqKxr2PgS1OKe1SzkwDpEMozP1EkwEuwUgQOEDZRO7H7kugOZSSIU_X7eZuscJGhSdHz32SZ99mdPimqCSDMosWu4inepw5iscmM5vKEP6Qduc.

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