Recruiting participants for sex research: How social media has broadened—and severely limited—our reach

First, though: “sex research”. What exactly is it and what do sex researchers do?

Sex research is a science. It follows the scientific method, a process for experimentation used to explore observations and answer questions. The scientific method consists of making hypotheses, deriving predictions, and carrying out experiments (or systematic, research-based observations) based on those predictions. Data are analyzed with statistical software packages, knowledge is advanced, more questions are asked, and some questions are answered so that people’s quality of life can improve. In this way, sex research follows the same steps and has similar real-world significance as other forms of scientific inquiry. Sex research, as a science, is as rigorous and serious as research in cancer or cardiovascular disease, for example. Yet, sex research is often relegated to being “fringe”—it is just not taken as seriously as other areas of research—sometimes to the point that sex researchers have difficulty getting funding for their studies or have to avoid calling themselves sex researchers in order to be taken seriously. Why? Because there is still a lot of stigma attached to the word “sex”, unfortunately—even when porn is freely available to anyone with an Internet connection, and even when sex is used in advertising to sell things. Somehow, it is ok to capitalize on sex, but studying it is “weird”.

Let’s talk a little about what sex researchers do. Sex researchers study numerous aspects of sexuality. It is a widespread field of study; the science of sex research can vary from studying sexual behaviours in animals to studying physiological processes during sexual arousal in humans. Sex researchers use many different methods to study questions within their field of study, from self-report measures (questionnaires) to brain imaging technology. The hope is that, no matter what we study and how we do it, in the end, we will likely “help” people in some way, for example, through advancing knowledge or impacting health care so that people can receive treatment for sexual dysfunctions more quickly.

One example of health care significance—and the issues that we face—is based on a condition that we study, Persistent Genital Arousal Disorder (PGAD). PGAD is characterized by the experience of persistent, unwanted, and distressing physiological genital arousal (in other words, genital sensitivity, swelling, feeling on the verge of orgasm) in the absence of sexual thoughts, fantasies or desire. Many people with this condition are so highly distressed that they think about suicide much more so than people in the general population (Jackowich et al., 2018); this distress results partly from the fact that the condition is not taken seriously by many health care providers or members of the public. Why might that be? Well, the simple existence of this condition challenges some assumptions about sexual arousal—namely that arousal is always something wanted, positive, and pleasurable. The result? When we post ads to recruit participants for a study, we see  comments/responses that often include misunderstanding about unwanted genital arousal, humour, or sarcasm; for example “isn’t this just hypersexuality?” or “I wish my wife experienced this!”, or “glad someone is finally solving this ‘problem’ ”. These invalidating reactions are disheartening, especially since they are often mirrored in the clinical setting: oftentimes, when people with PGAD disclose their symptoms to a health care provider to get help, they don’t get help because they are not believed. Sex researchers can play a really important role in translating research findings to health care providers and the public to help change perceptions of conditions like PGAD—so that it can be taken seriously. We did that with vulvodynia. How? By doing excellent science that is relevant and meaningful (Bornstein et al., 2015; Goldstein et al., 2016; Pukall et al., 2016).

But, in order to do all the science-y studies that we do so well with real people, we need to recruit real people. One might think that because of all the stigma out there, we might have real issues recruiting people, because… well, who on earth would participate in sex research studies? On the other hand, some people might think that people will line up for hours to participate in our studies, especially the ones involving porn (like this one). Of course, neither extreme is correct. We certainly do get participants for our studies and we have lots of strategies for recruitment. But the one we want to focus on for this blog is the social media—and our experiences recruiting via social media over the last 10 years.

The Internet has given researchers a wonderful platform to quickly and cost-effectively recruit participants. At times, we have had great success, depending on the study title, mind you. A recent study (an MRI study investigating clitoral structural changes during arousal) that we were recruiting for invited some interesting responses, like several “Haha” reactions and other comments, such as [men] saying “Ooh I'm interested in researching female sexual arousal ;)”, or “I know everything there is to know about clitoral arousal; just ask me, I have all the answers, I’m that good!” Ok, ok, we get it: you think the study on clitorises is funny, you like sex, and you think you are so good at sex that you want to announce this “fact” about yourself on social media.

But, it can be really frustrating to see comments that  mock the study, or worse, make fun of people who have a particular condition. Some commenters even think they have all the answers already (if we did, then we wouldn’t need to do research on the topic, right?). For a recent study on female genital pain, someone stated: “something is wrong with them if it hurts, they should have a glass of wine”. Yes, something is wrong, and it is not with the person, it is with their genitals. And the glass of wine part? Not only is it dangerous and irresponsible to suggest that someone get drunk to engage in penetrative sexual activity (consent, anyone?), it is useless information. Of course that doesn’t work. Why would it? Is alcohol a cure for chronic pain? Nope.

Part of our job these days is to monitor comments when we post new studies, so we can delete rude and inappropriate comments. Sometimes, we also have to ban people from our social media sites.  

And there is another layer to this social media topic, and it is truly disappointing. Recently, Marketplace on Facebook took down our ads because of “crude language”. Sure, “clitoris” might not be a word that you hear over dinner (unless you are having dinner with us!), but it is an anatomical term that refers to a body part—but because it is a “sexual” body part, it is apparently not ok. And there is only so much creativity that we can do to meet the “standards” while being honest about our research study. I mean, how else can we be honest about the point of the study? Call the clitoris the “happy button”? The “lovebud”? Who would know what we were actually talking about?

The same thing happened when we posted on Facebook to recruit prostate cancer survivors and patients for a sexual health study. Our ad was immediately rejected due to “sexual content.” When the student appealed the decision, we were able to reach an actual person who reversed the decision. But we had no such luck with the French ad for the same study, unfortunately. We reached no one, even after multiple attempts, and to this day, we have not been able to advertise on Facebook for the French version of this study. We’ve been completely cut off and there is nothing we can do about it.

Other online avenues have also proven difficult. Many social media platforms will not let us post words that are considered “lewd” or “offensive”, so our website and lab name alone get flagged constantly (sexlab.ca). If a study title and description contains words like “genitals”, vulvar” sexuality”, and “sexual health”, we are immediately rejected from posting. Don’t even ask what happened with our “anal pain” study!  

More recently, all of our lab’s study ads were removed from Kijiji. Upon investigating the policy cited by Kijiji for removing our ad, we were baffled to find out that the same policy also covered ads for prostitution and human trafficking. We get that these words are triggers for “bad things related to sex”, but not all “sex stuff” is predatory or involves selling or buying sex. Sometimes, the word “sex” signals a real attempt to do serious scientific research on an issue affecting real people. But how do we get this message across to the people who run these sites? Where ARE the people who run these sites? We have had very little luck finding anyone.

What can we do? Good question. The issue is a much bigger one than our advertising woes. Our society both loves and hates sex (free unregulated porn is available but solid sexual health education is not, so many young adults are using porn as “sex ed”, which is not a great idea—we need another blog on this topic, that’s for sure), and this ambivalence translates into discomfort about sex. That discomfort comes out in many ways; some people deny the importance of sexuality knowledge/education/research, make fun of sex, or belittle it. We need to create a culture of acceptance of sex and frank conversations about it, to start breaking down the stigma associated with it. And a large part of that culture involves conducting sex research, translating the findings of the study to the people, and sites and other people being open to supporting this research.

Caroline Pukall, Shannon Coyle, Robyn Jackowich, Meghan McInnis, Lindsey Yessick

References

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., . . consensus vulvar pain terminology committee of the International Society for the Study of Vulvovaginal Disease (ISSVD), the International Society for the Study of Womenʼs Sexual Health (ISSWSH), and the International Pelvic Pain Society (IPPS). (2016). 2015 ISSVD, ISSWSH and IPPS consensus terminology and classification of persistent vulvar pain and vulvodynia. Obstetrics & Gynecology, 127(4), 745-751. doi:10.1097/AOG.0000000000001359

Goldstein, A. T., Pukall, C. F., Brown, C., Bergeron, S., Stein, A., & Kellogg-Spadt, S. (2016). Vulvodynia: Assessment and treatment. The Journal of Sexual Medicine, 13(4), 572-590. doi:10.1016/j.jsxm.2016.01.020

Jackowich, R., Pink, L., Gordon, A., & Pukall, C. (2017). 059 health care experiences of women with symptoms of persistent genital arousal. The Journal of Sexual Medicine, 14(6), e369-e369. doi:10.1016/j.jsxm.2017.04.057

Pukall, C. F., Goldstein, A. T., Bergeron, S., Foster, D., Stein, A., Kellogg-Spadt, S., & Bachmann, G. (2016). Vulvodynia: Definition, prevalence, impact, and pathophysiological factors. The Journal of Sexual Medicine, 13(3), 291-304. doi:10.1016/j.jsxm.2015.12.021

HPV & You: The Student’s Guide to Protection & Screening on Campus

Most of you are probably aware of the common sexually transmitted infections chlamydia and gonorrhea. Of course, knowing how to protect yourself against these bacteria is extremely important for anyone who is sexually active (hint: use a condom!). Unfortunately, HPV is not talked about nearly as frequently and is not quite as simple, despite being by far the most common STI.

HPV stands for Human Papilloma Virus, and there are over 100 different circulating strains.1 Of these, we know that 40 can infect the genital tract, with exposure occurring during vaginal, anal, oral, or digital sex (i.e., finger penetration). Although a condom lowers the chance of transmission, HPV can be spread through exposed skin that is not covered by a condom.2 A 2016 systematic review found that it may even be spread by sharing sex toys, or theoretically by coming into contact with infected surfaces at the gym or locker room (yuck!).3 It comes as no surprise then, that most sexually active people have been exposed to HPV at one time or another, with an estimated 75% of sexually active Canadians infected at least once in their lifetime.  

The good news is that the majority of HPV strains are harmless, usually asymptomatic, and most people will clear the infection on their own within 1-2 years like any other common virus.4 In fact, most people who have been infected with HPV would never know it. Some strains, while low-risk for causing cancerous changes, can lead to genital warts that can be emotionally distressing and difficult to remove. Other strains classified as high risk are more likely cause changes in cellular structure, called dysplasia, that have the potential to turn into cancer.

Almost all (99%) of cervical cancers (and some types of vaginal, vulvar, and anal cancers) can be traced back to infection with these high-risk HPV strains, which is why regular pap screening is so important.1,4 Pap tests detect precancerous cellular changes at the cervix before they become dangerous, and rates of cervical cancer have declined greatly since pap screening became widespread in the 1970s. During a pap test, the cervix is visualized with a speculum and a thin layer of cells is scraped off to check for cellular dysplasia, or abnormal cervical cells. These cells are then graded according to how advanced the changes are, which directs your physician on what to do next. This may be more as simple as more frequent monitoring with repeat pap tests until you have had several successive normal pap tests, or referral to a colposcopy clinic where cervical cells are looked at more closely under a special microscope.

Most high-risk HPV infections will be fought off by the immune system without progressing into cancer. For example, the most common high-risk subtype, HPV 16, is cleared by the body within 16 months on average, according to an Advisory Committee Statement by the Public Health Agency of Canada.1 This is the reason why pap testing is only recommended once every 3 years in Ontario, as most infections will clear on their own within this time. If we increased the frequency of screening pap tests, we would pick up more cellular changes that would have gone away on their own within the testing period. This timeline saves individuals from repeated invasive testing like colposcopy (looking at the cervix up close through a microscope) and biopsy (taking a small sample of cervical tissue for testing) that would ultimately be unnecessary, because these cellular changes would have never progressed into cervical cancer.

Conversely, the vast majority of cervical cancer is slow growing, taking a decade or more to develop.1 This slow growth means that persistent changes in the cervical cells that are not being cleared by the body can be caught and managed safely within the 3-year screening period to prevent the development of invasive cancer. A new type of testing that looks directly for the HPV virus in cells, rather than testing for cellular changes caused by HPV, has shown promise in further improving the accuracy of detecting cervical precancer and has already been implemented in several countries.4 If HPV testing is adopted in Canada as part of regular screening, cervical testing may only be required once every 5 years instead of once every 3 years provided results are normal. The research for this adoption is up and coming, and policy changes for cervical cancer screening guidelines in Ontario will likely change in the next 5-10 years.  

So what can be done to protect against HPV and cervical cancer? The absolute best thing that you can do to protect yourself is to GET VACCINATED as well as to ensure you are receiving regular pap tests by your primary care provider according to the Ontario screening guidelines. Again, condoms reduce the risk of transmission, but cannot completely prevent it.

Vaccination with Gardasil 9 protects against the 9 HPV strains that cause 90% of cervical cancers and the 2 HPV strains that cause 90% of genital warts.5 The peak risk for HPV exposure is in the first 5 years of sexual activity, which is why this vaccination is offered to children in Grades 6-8 in Ontario (ideally before the first time you have sex).6 This program was recently expanded to include boys as well as girls as a result of growing evidence that HPV infection rates are similar between adolescent males and females. In addition to lowering rates of transmission to sexual partners, vaccination of males protects them from genital warts and some HPV-related cancers such as anal and penile cancer.1 Vaccination is currently recommended for women until the age of 45 and men until the age of 25, and may be covered or partially covered by university or private drug plans.

Screening for cervical cancer begins at age 21 or at the age of first sexual activity, whichever is later, and occurs once every 3 years thereafter if cervical cells look normal. These guidelines are the same for women who have sex with women and transgendered men who have a cervix, and do not change if you have been vaccinated.7

The good news is that while HPV infection is common, there are easy and effective measures that can be taken to protect yourself from genital warts and cervical cancer. Cervical cancer is now one of the least common cancers affecting women, thanks to regular pap tests! If you don’t have a family doctor you see regularly, visit Queen’s Student Health on campus to get screened and discuss options for vaccination today. Your cervix will thank you for it!

Celine Conforti, BScH, MD Candidate at McMaster University
Sarah Saliba, BScH, MD Candidate at McMaster University

References

1. Public Health Agency of Canada. National Advisory Committee on Immunization. (2007). Canada Communicable Disease Report: Statement on human papillomavirus vaccine (Volume 33, ACS-2). Ottawa ON: Desktop Publishing.

2. U.S. Department of Health. Centre for Disease Control and Prevention. (2017). Genital HPV infection – fact sheet. Retreived from https://www.cdc.gov/std/hpv/stdfact-hpv.htm

3. Liu, Z., Rashid, T., & Nyitray, A. G. (2016). Penises not required: a systematic review of the potential for human papillomavirus horizontal transmission that is non-sexual or does not include penile penetration. Sex Health, 13(1), 10-21.

4. National Cancer Institute. (2014). Pap and HPV testing. Retreived from https://www.cancer.gov/types/cervical/pap-hpv-testing-fact-sheet#q1

5. Merck Canada. (2018). Protection against HPV-related cancers and genital warts. Retrieved from https://www.gardasil9.ca

6. Government of Canada. Canadian Immunization Guide: Part 4 – Active Vaccines. (2018). Human papillomavirus vaccine. Retreived from https://www.canada.ca/en/public-health/services/publications/healthy-living/canadian-immunization-guide-part-4-active-vaccines/page-9-human-papillomavirus-vaccine.html

7. Cancer Care Ontario. (2017). Screening guidelines – Cervical cancer. Retreived from https://archive.cancercare.on.ca/pcs/screening/cervscreening/screening_guidelines/