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Returning STIs Test Results Anonymously Online


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Sara Mathieu-C of the University of Montreal higlights the tensions between ethical recommendations and research priorities in a research study that uses technology to provide sexual health …

Sara Mathieu-C of the University of Montreal higlights the tensions between ethical recommendations and research priorities in a research study that uses technology to provide sexual health information of youth aged 17-24 yrs in Quebec. Presented at YTH Live 2014 session "Calling all HIV Providers: Resources and New Media for You."

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  • 1. Returning STIs Test Results Anonymously Online in a Population-Based Prevalence Study When Technology is Adding New Challenges to Research Mathieu-C., S.1, Lambert, G.2, Goggin, P.2, Otis, J.3 Mondou, I.4 Bérard, A.M.2 1. University of Montreal, 2. Quebec National Institute of Public Health, 3. Canadian Research Chair on Health Education 4. Direction de la santé publique of Montreal, April 6-8, 2014 San Francisco, CA Annual Conference on Youth + Tech + Health
  • 2. • The PIXEL study • Returning STIs test results: feasibility and ethical issues • Lessons learned from this experience Presentation Outline
  • 3. • Constant increase of reported cases of chlamydia and gonorrhea among youth aged 17-25 years in Quebec • Recent implementation of an HPV universal vaccination program • Limited number of indicators addressing sexual health covered by recent Canadian and Quebec population-based surveys The study: Background
  • 4. • To provide a comprehensive understanding of the sexual health of youth aged 17 to 24 • Objectives 1. Describe sexual behaviors and associated factors 2. Assess sexual health capabilities from an event-based perspective 3. Characterize access to sexual health services 4. Provide an estimate of Chlamydia, Gonorrhea and HPV prevalence The study : Aim
  • 5. • Mixed probabilistic and convenience sample of 4 000 respondents aged 17-24, students and workers • Data collection (May 2013 to June 2014) 1) Questionnaire: Behavioral data 2) Biological self-sampling: chlamydia, gonorrhoea and human papillomavirus (HVP) tests The study: Methodology
  • 6. • Typical data collection session (2 interviewers, 35-50 min) 1. Instruction & consent form 2. Laboratory code & password 3. Questionnaire: self-administered, computer-assisted 4. Oral self-sampling: oral rinse, in class, all together 5. Genital self-sampling: vaginal swab (women), urinary (men) The study: Methodology (2)
  • 7. • Following data collection (within 3-4 weeks) 6. Specimens analysis and data crossing from the two databases (questionnaire + biological tests) 7. Access to Chlamydia and Gonorrhea test results: online and anonymous (via password-protected portal) The study: Methodology (3) BD Probe Tec DNA Assays
  • 8. • Reaching consensus on whether to return results depends on what is achievable and what is desirable or vice versa How did we end up returning the results? Techno Ethics Giving back the results
  • 9. 1. Availability of free STI tests outside study setting 2. Acceptability of returning results (or not) 3. Accuracy of STI tests and delays 1. Clinical standard for treatment 2. Consistent approach supports effective communication 3. Practical considerations and cost efficiency Returning STIs test results in the context of PIXEL What should be taken into account? Inspired by Field & al. (2012) approach
  • 10. Inspired by Field & al. (2012) approach no.1 Availability of free STI tests outside study setting • Pros: Direct clinical benefits when results are returned to respondents with advices on how to quickly and locally access counseling and treatment. • Cons: Depends on respondents’ willingness to access available services. Providing detailed information describing access and availability of STI testing services could be sufficient.
  • 11. Inspired by Field & al. (2012) approach no.2 Accuracy of STIs tests and delays • Cons: Under study conditions, harder to reach the clinical level of accuracy and acceptable delays. • Pros: It is possible to achieve high level of epidemiological and clinical validity with self-sampling kit both among men (urine) and women (vaginal). To be approved in Canada, it needs to be carried on site and under professional guidance.
  • 12. Inspired by Field & al. (2012) approach no.3 Acceptability of returning STIs test results (or not) • Cons: Possible to achieve acceptable participation rates without returning the results. • Pros: Literature review and pilot project to explore respondents’ concerns about returning (or not) the results have demonstrated their interest to access results online & anonymously.
  • 13. Inspired by Field & al. (2012) approach no.4 Clinical standard for treatment • Pros: Chlamydia and gonorrhea can cause serious and permanent health problems and there are clear guidelines for diagnosis and treatment to avoid those consequences. • Cons: The majority of HPV infections are likely to disappear spontaneously without treatment. HPV positive result may not require management or treatment and may cause unnecessary distress.
  • 14. Inspired by Field & al. (2012) approach no.5 Consistent approach & effective communication • Cons: Providing results for STIs but not other may be misinterpreted and give a false sense of security. Uniformed approach is easier and faster to communicate. • Pros: An interactive “face-to-face” approach, supplemental to online informative resources may reduce the study complexity and guide respondents though their interpretation of test results.
  • 15. Inspired by Field & al. (2012) approach no.6 Practical considerations and cost efficiency • Pros: Self-sampling kit, computerized questionnaires, password- protected portal and online resources make it feasible for respondents to access STIs tests results online and anonymously. • Cons: Major human and financial costs are associated with appropriate return of STIs tests results.
  • 16. no.6 Practical considerations and cost efficiency • Even if technology made it feasible, our research capacity was truly affected by the requirements related to making STIs test results accessible to respondents… • Standards for accurate self-sampling ($) • Individual rather than pooled laboratory analysis ($) • Guaranty for appropriate delays ($) • Availability of interviewer to quickly answer online questions ($) • Necessity for ongoing technical support ($)
  • 17. Lessons learned from • Both PIXEL Advisory Committee and Research Ethics Committee recommended to return STIs test results (not HPV) because of its direct clinical benefits for respondents. • Technology made it feasible but there were major and unpredicted human & financial costs related to that process. • Returning the results affects research validity as participation rate may be higher, but prone to self-selection bias. Is it the best context to return STIs test results? Is it the best way to spend research funds?
  • 18. Special thank to all respondants and to P ixe l research team! For more information, contact: Sara Mathieu-C., Dr. Gilles Lambert, Data collection continues until June 2014 We hope to be back next year to present and discuss the results.