The document discusses returning sexually transmitted infection (STI) test results from a population-based study of youth in Quebec. While technology allows for anonymously returning results online, doing so introduced significant human and financial costs. These included ensuring accurate self-sampling, individual lab analysis, timely results, and ongoing technical support. Although ethics boards recommended returning results for treatable infections like chlamydia and gonorrhea, it increased costs and affected research validity through self-selection bias. The study aims to understand youth sexual health and behaviors, characterize STI prevalence, and inform public health efforts, but returning all results may not be the best use of research funds to achieve these goals.

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., sara.mathieu.chartier@umontreal.ca
Dr. Gilles Lambert, glambert@santepub-mtl.qc.ca
Data collection continues until June 2014
We hope to be back next year to
present and discuss the results.