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

September 2018 SexLab Update

SexLab has been very busy during the 2017-18 academic year. Our blog is celebrating its third anniversary and with that we have some exciting news to share.

Our research associate, Shannon Coyle, spent the summer revamping our website and blog. Check out sexlab.ca for our fully redesigned lab page!

Over the last year, our Lab Director, Dr. Caroline Pukall—with invaluable input from her fantastic team and wonderful collaborators—has been incredibly productive, with over 20 new publications. She and her team members have attended numerous conferences in order to get the word out on their cutting-edge research via many well-received presentations. In addition, Caroline, along with co-editors Drs. Andrew Goldstein and Irwin Goldstein, are working on the second edition of their successful book, Female Sexual Pain Disorders: Evaluation and Management. They have lined up authors with unique expertise in order to provide healthcare professionals with state-of-the-art content related to all aspects of genitopelvic pain (expected publication date: 2020).

In terms of teaching, Caroline completely overhauled her online human sexuality course, and taught it in the Winter term 2018. It was popular and highly rated by students. The on campus course has also seen significant changes and enrolment continues to be at its maximum. Caroline is using the second edition of her Human Sexuality: A Contemporary Introduction (Oxford University Press, 2017) textbook for these courses, and she is grateful to all the contributors to this successful text.

Caroline has also been involved in successful grant applications from CIHR (with Dr. Linda McLean from the University of Ottawa), SSHRC (with Dr. Jordan Poppenk from Queen’s University), the Catherine Oxenberg Foundation (with Dr. Meredith Chivers from Queen’s University) and ISSWSH (with her student, Robyn Jackowich). Currently, she is working on numerous projects with students and collaborators on different topics, including: persistent genital arousal disorder (PGAD), diverse relationships, prostate cancer, penile pain, a vulvar pain questionnaire, and a clitoral MRI study! In addition, she is co-chair of the Consensus Meeting on PGAD (with Drs. Irwin Goldstein and Barry Komisaruk) to be held in March 2019 prior to the ISSWSH meeting. This academic year is sure to be another busy, yet productive, one!

We also have a new (and familiar!) recruit who recently (re)joined the SexLab team, Dr. Stéphanie Boyer. Stéphanie completed her Master’s and Doctoral degrees in SexLab, after which she spent several years practicing psychology in Boston, with appointments at McLean Hospital and Harvard Medical School. She has returned to us after 5 years to lend her expertise to a number of projects in the lab related to women’s sexual health, ranging from sexual psychophysiological research to healthcare experiences in women with sexual dysfunction and genital pain. We are VERY excited to have her back!

This past year, our senior PhD students, Jackie Cappell and Katrina Bouchard, have been busy applying for internship and wrapping up their dissertations.

Over the past year, Katrina applied for a pre-doctoral internship in clinical psychology and worked on her dissertation on women's sexual arousal. She successfully matched to St. Joseph’s Healthcare in Hamilton and started a year-long psychology residency in September 2018. This academic year, Katrina will finalize her dissertation and submit the associated manuscripts for publication. She plans to defend her dissertation in the coming months. 

Jackie also applied for a clinical psychology doctoral residency position last year. She successfully matched to Eastern Health in St. John’s, Newfoundland and just started this year-long position in September 2018. Jackie’s first study from her dissertation—which focuses on postpartum sexuality—was published in Birth, and several media outlets covered the novel findings. Data collection and analyses are complete for her two in-lab studies and she has presented her findings at national and international conferences, including the Society for Sex Therapy and Research (SSTAR) and the International Academy of Sex Research (IASR). Jackie is currently in the process of writing her dissertation and submitting the manuscripts for publication. She plans to defend her dissertation in the coming months. 

Our two 2nd year PhD students had a full summer with successfully completing their comprehensive exams while still managing to contribute a wealth of knowledge to the field of sexuality research via conferences and publications

This fall, Robyn Jackowich is entering the third year of her PhD in clinical psychology. The focus of her doctoral research is on a biopsychosocial investigation of persistent genital arousal disorder (PGAD) in women, examining psychosocial, sensory, and vascular factors. She was awarded a 2018 ISSWSH Scholars in Women’s Sexual Health Research Grant to support this research. During the past academic year, she published articles on PGAD in the Journal of Sexual Medicine and Sexual Medicine Reviews.

This past summer, Robyn completed her comprehensive exam and project (Developing a Self-Report Measure of Genital Arousal Sensations and Perceptions), and looks forward to sharing the results of this project at the upcoming 2018 Canadian Sex Research Forum in Toronto, ON.

Robyn also received the 2017 Routledge Young Investigator Award in Human Sexuality from the Journal of Sex and Marital Therapy, for her article titled Symptom Characteristics and Medical History of an Online Sample of Women Who Experience Symptoms of Persistent Genital Arousal. She accepted the award and presented these findings at the 2018 SSTAR meeting in Philadelphia, PA.

Stéphanie Gauvin received an Ontario Women’s Health Scholar Award and Ontario Graduate Scholarship for her doctoral dissertation which explores how chemically-induced menopause affects sexual and relationship functioning in women who have undergone cancer treatments for breast cancer.

She was recently awarded a Canadian Institutes of Health Research (Institute of Gender and Health) Hacking the Knowledge Gap: Trainee Award for Innovative Thinking to Support LGBTQI2S Health and Wellness. Part of this award funded a trip to Vancouver to attend the two-day Design Jam event. At the design jam, she worked with team members Philip Joy and Matthew Lee from Dalhousie University to create a pitch for a comic book anthology created in collaboration with queer artists, called Queer Bodies in Confidence, that highlights the challenges that queer men experience in relation to their body image. Her team was awarded with having the best pitch at the event.

Stéphanie also published the SexFlex Scale from her master’s thesis in the Journal of Sex & Marital therapy and the Handbook of Sexuality-Related Measures. In addition, she published a review paper on sexual problems and sexual scripts of individuals who self-identify as bisexual and co-authored a textbook chapter with Drs. Pukall and Eccles.

She attended the Canadian Sex Research Forum’s 2017 conference and won an award for the best data blitz for her presentation on measurement invariance. Stephanie is working on a paper with labmate Lindsey on how discrepancies in vibrator usage relates to sexual well-being, and they are working on a project examining biopsychosocial factors of idiopathic anal pain.

Our Masters students have been writing this past year in preparation for defending their theses and a thesis proposal.

Meghan McInnis has spent the last several months wrapping up her Master’s thesis study, which is an investigation of prostate cancer patient experiences. Over the summer, she has been writing up her thesis, which she will be defending later in September.

Along with Stéphanie G., Meghan was awarded a Canadian Institutes of Health Research (Institute of Gender and Health) Hacking the Knowledge Gap: Trainee Award for Innovative Thinking to Support LGBTQI2S Health and Wellness. Part of this award funded Meghan’s attendance at the Design Jam event in Vancouver this past February. For two days, she worked with other cancer researchers (Amanda Bolderston from the University of Alberta and Evan Taylor from the University of British Columbia) to develop an initiative to support LGBTQ+ cancer patients. Meghan and the rest of her team will be working with Bird Communications to develop a web site that will include video testimonials from patients and survivors and other targeted resources.

Meghan attended the annual meeting of the Society for Sex Therapy and Research in Philadelphia in April. She presented a poster on Canadian healthcare professional students’ self-reported competence and confidence with working with transgender patients and clients. Currently, Meghan is co-authoring a paper with Stéphanie G. based on these data.

Lindsey Yessick has spent her summer analyzing data and writing her Master’s thesis, which uses functional magnetic resonance imaging to examining pain processing in the spinal cord/brain of women with provoked vestibulodynia. She will defend her thesis on September 24th.

Many of her studies have been ongoing while her thesis was in preparation, including a collaboration with Stéphanie G. to examine biopsychosocial factors of idiopathic anal pain. Lindsey also launched a study validating a new fMRI paradigm to assess clitoral arousal (finded by the Catherine Oxenberg Foundation).

Lindsey attended the SSTAR meeting in Philadelphia as well. Her poster was on the impact of a discrepancy between solitary and partnered vibrator use on sexual well-being. In addition, she will also be presenting the results of her thesis at the 2018 International Association for the Study of Pain conference in Boston this week.

Our newest student, Kayla Mooney, completed the majority of her required coursework for her Master’s degree. During the winter, she also assisted with an 8-week online educational program for women with persistent genital arousal disorder (PGAD). She will be presenting a poster at the upcoming Canadian Sex Research Forum in Toronto on some data collected from this program.

In the spring, Caroline, Robyn, and Kayla co-authored a review paper that proposed a model of “genitopelvic dysesthesias” to conceptualize conditions characterized by unpleasant genitopelvic sensations, which will appear in the next edition of Sexual Medicine Reviews. Kayla and Caroline are also co-authoring a paper with collaborators at Dalhousie University on experiences of pain during intercourse during pregnancy.

Kayla has spent the last several months preparing her Master’s proposal, which she defended at the end of August. Her Master’s thesis will be an investigation of how PGAD affects the relational, sexual, and psychological well-being of couples, and how intimate partners respond to their significant others’ PGAD symptoms. She is hoping to begin data collection for her thesis in October.

So as you have read, SexLab has been incredibly productive this past year! In 2018-19, we look forward to wrapping up several important research projects, publishing new findings, and continuing our research in the field of human sexuality.

Shannon Coyle, Research Associate