'Who is Helsinki?' Sex workers advise improving communication for good participatory practice in clinical trials

Health Education Research

Volumn 26, Issue 3, 2011, Pages 466-475

  Ditmore, Melissa Hope ^a   Allman, Dan ^b  

^a University of Toronto ^*  (United States)

^b UNIVERSITY OF TORONTO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ATTITUDE TO HEALTH; CLINICAL TRIAL (TOPIC); HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INFORMATION PROCESSING; INTERPERSONAL COMMUNICATION; PROSTITUTION;

CLINICAL TRIALS AS TOPIC; COMMUNICATION; DATA COLLECTION; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HIV INFECTIONS; HUMANS; PROSTITUTION;

EID: 79957940887     PISSN: 02681153     EISSN: 14653648     Source Type: Journal    
DOI: 10.1093/her/cyq087     Document Type: Article

References (35)

1. Forbes A, Mudaliar S. Preventing Prevention Trial Failures: A Case Study and Lessons for Future from the 2004 Tenofovir Trial in Cambodia. Washington, DC: Global Campaign for Microbicides at PATH, 2009. Available at: Www.global-campaign.org/clientfiles/Cambodia.pdf. Accessed: 8 January 2011.
2. McGrory E, Irvin A, Hiese L. Research Rashomon: Lessons from the Cameroon Pre Exposure Prophylaxis Trial Site. Washington, DC: Global Campaign for Microbicides at PATH, 2009. Available at: Www.global-campaign.org/clientfiles/ Cameroon.pdf. Accessed: 8 January 2011.
3. World Medical Association. Code of Ethics of the (Declaration of Helsinki) for Experiments Involving Humans. 1964. Available at: Http://ohsr.od.nih.gov/guidelines/Helsinki.html. Accessed: 8 January 2011.
4. Mills EJ, Singh S, Singh JA et al. Designing research in vulnerable populations: Lessons from HIV prevention trials that stopped early. Br Med J 2005; 331: 1403-6. Available at: Http://www.bmj.com/cgi/content/extract/331/ 7529/1403. Accessed: 8 January 2011 (Pubitemid 43773500)
5. Mills E, Rachlis B, Wu Ping et al. Media reporting of tenofovir trials in Cambodia and Cameroon.BMC Int Health Hum Rights 2005; 5: 6. Available at: Http://www.biomedcentral. com/1472-698X/5/6. Accessed: 8 January 2011.
6. Singh JA, Mills EJ. The abandoned trials of pre-exposure prophylaxis for HIV: What went wrong? PLoS Med 2005; 2: E234. Available at: Http://www. plosmedicine.org/article/info%3Adoi% 2F10.1371%2Fjournal.pmed.0020234. Accessed: 8 January 2011.
7. Loff B, Jenkins C, Ditmore M et al. Unethical clinical trials in Thailand: A community response. The Lancet 2005; 6: 1618-9.
8. UNAIDS/AVAC. Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials, 1st edn. 2007. Available at: Http://data.unaids.org/pub/ manual/2007/jc1364-good-participatory-guidelines-en.pdf. Accessed: 8 January 2011.
9. UNAIDS/AVAC. Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials, 2nd edn. draft version for public comment. Available at: Http://www. avac.org/ht/a/GetDocumentAction/i/28488. Accessed: 8 January 2011.
10. Jenkins C. Violence and Exposure to HIV among Sex Workers in Phnom Penh. Cambodia. Washington, DC: USAID, 2006.
11. Jenkins C, na Ayuthaya P, Hunter A. Kathoey in Thailand: HIV/AIDS and Life Opportunities. Washington, DC: USAID, 2005. Available at: Http://www.soros.org/initiatives/ health/focus/sharp/articles-publications/ publications/compendium-20070319/health-methodologies/katoey-200 70402.pdf. Accessed: 8 January 2011.
12. Gutierrez Luna A, Angeles Llerenes A, Wirtz VJ et al. Strategies and ethical considerations for the recruitment of young men who have sex with men: Challenges of a vaccination trial in Mexico. Clin Trials 2009; 6: 365-72.
13. Kogan JN, Dennehy EB, Miklowitz DJ et al. Increasing minority research participation through collaboration with community outpatient clinics: The STEP-BD Community Partners Experience. Clin Trials 2009; 6: 344-54.
14. Robinson ET, Baron D, Heise LL et al. Communications Handbook for Clinical Trials. Family Health International Available at: Http://www.fhi.org/ en/RH/Pubs/booksReports/comm-handbook.htm. Accessed: 8 January 2011.
15. El-Sadr W, Capps L. The challenge of minority recruitment in clinical trials for AIDS. J Am Med Assoc 1992; 267: 954-7.
16. AVAC Community Consultations on Good Participatory Practice Guidelines. Partner Report-Back Meeting 30 April-2 May, 2009, Johannesburg. South Africa. New York: AVAC, 2009.
17. Tindana PO, Singh JA, Tracy CS et al. Grand Challenges in Global Health: Community Engagement in Research in Developing Countries.PLoS Med 2007; 4: Available at: Http:// www.plosmedicine.org/article/info:doi/10.1371/journal. pmed.0040273. Accessed: 8 January 2011.
18. Bhan A, Singh JA, Upshur REG et al. Grand challenges in global health: Engaging civil society organizations in biomedical research in developing countries.PLoS Med 2007; 4: E272. Available at: Http://www.plosmedicine.org/ article/ info%3Adoi%2F10.1371%2Fjournal.pmed.0040272. Accessed: 8 January 2011.
19. Allman D, Myers T, Cockerill R. Concepts, Definitions and Models for Community-Based HIV Prevention Research in Canada. Toronto, Ontario: HIV Social; Behavioural and Epidemiological Studies Unit, University of Toronto, 1997. Available at: Http://www.cbrc.net/library/ 90-cbrclibraryresearchtools/195- concepts-definitionsand- models-for-community-based-hiv-preventionresearch. html. Accessed: 8 January 2011.
20. Ellen JM, Wallace M, Sawe FK et al. Community engagement and investment in biomedical HIV prevention research for youth: Rationale, challenges, and approaches. JAIDS Journal of Acquired Immune Deficiency Syndromes 2010; 54: S7-11.
21. Swallow V, Newton J, Van Lottum C. How to manage and display qualitative data using 'Framework' and Microsoft Excel. Journal of Clinical Nursing 2003; 12: 610-2. (Pubitemid 37260213)
22. Meyer DZ, Avery LA. Excel as a qualitative data analysis tool. Field Method 2009; 21: 92-113.
23. Wasserman JA, Clair JM, Wilson KL. Problematics of grounded theory: Innovations for developing an increasingly rigorous qualitative method. Qual Res 2009; 9: 355-82.
24. Wolfe D. Paradoxes in antiretrovial treatment for injecting drug users: Access, adherence and structural barriers in Asia and the former Soviet Union. Int J Drug Policy 2007; 18: 246-54. (Pubitemid 47135597)
25. Folayan MO, Allman D. Clinical trials as an industry and an employer of labour. J Cult Econ. in press DOI: 10.1080/ 17530350.2011.535376.
26. Pyett P. Doing it together: Sex workers and researchers. Res Sex Work 1998; 1: 11-13.
27. Shaver F. Sex work research: Methodological and ethical challenges. J Interpers Violence 2005; 20: 296-319. (Pubitemid 40305965)
28. Paasche-Orlow MK, Taylor HA, Brancati FL. Readability standards for informed-consent forms as compared with actual readability. N Engl J Med 2003; 348: 721-6. (Pubitemid 36237042)
29. Bertoli AM, Strusberg I, Fierro GA et al. Lack of correlation between satisfaction and knowledge in clinical trials participants: A pilot study. Contemp Clin Trials 2007; 28: 730-6. (Pubitemid 47499253)
30. Rucker-Whitaker C, Flynn KJ, Kravitz G et al. Understanding African-American participation in a behavioral intervention: Results from focus groups. Contemp Clin Trials 2006; 27: 274-86.
31. Corneli AL, Piwoz EG, Bentley ME et al. Involving communities in the design of clinical trial protocols: The BAN study in Lilongwe, Malawi. Contemp Clin Trials 2007; 28: 59-67. (Pubitemid 44794605)
32. Paskett ED, Reeves KW, McLaughlin JM et al. Recruitment of minority and underserved populations in the United States: The centers for population health and health disparities experience. Contemp Clin Trials 2008; 29: 847-61.
33. Thapinta D, Jenkins RA. Starting from scratch: Program development and lessons learned from HIV vaccine trial counseling in Thailand. Contemp Clin Trials 2007; 28: 409-22. (Pubitemid 46755024)
34. ven der Horst C, Chasela C, Ahmed Y et al. Modifications of a large HIV prevention clinical trial to fit changing realities: A case study of the breastfeeding, antiretroviral, and nutrition (BAN) protocol in Lilongwe, Malawi. Contemp Clin Trials 2009; 30: 24-33.
35. Bartholomew LK, Cushman WC, Cutler JA et al. Getting clinical trial results into practice: Design, implementation, and process evaluation of the ALLHAT Dissemination Project. Clin Trials 2009; 6: 329-43.