Digital Women’s Health: How do we create sustainable knowledge?
ICT as a material should be a resource for creating innovative alternatives of how we design and package learning experiences. This is exactly what me and my colleagues set out to explore: How might a digital tool bring meaningful and sustainable knowledge around women’s health? We started by researching where we are today in terms of women’s health — what problems and needs are there? How has digitization changed the way women (and men) are able to build knowledge about women’s health.
Taboo, shame, misinformation and mutilation
Female body taboos and shame of their genitals and biological functions are still a fact. One reason is the lack of information on women’s body and the many (possible) trajectories of the body over the course of a life; puberty, pregnancy, menopause etc.
There are also a bunch of health related issues many women have very limited or no awareness of. Lack of awareness could in turn result in faulty treatment as well as missed opportunities to prevent suffering in the first place.
There is an increase in female genitalia plastic surgery (FGPS), and simultaneously a great struggle to abolish female gender mutilation. These two cultural expressions highlight the fact that women’s bodies time and again are subjected to religious, societal, political as well as medical ideas. Which in turn renegotiate what is to be considered normal and acceptable.
What type knowledge building have emerged on women’s health in the digital age?
There are many stakeholders that want to tackle misconceptions and improve women’s health and confidence. Sex health educators, gynecologists and midwives are often active in building women’s (and men’s) knowledge on the female body.
The Internet has turned out to be a place where many individuals turn to find answers. Especially forums and websites allow for intimate questions. It goes to show that anonymity makes it easier to ask difficult questions and helps people to avoid feeling shame.
Empowerment is happening through social media on this topic through facebook groups focused on women’s health related discussions. Here, members are free to post concerns and get counseling from other group members.
This way of sharing experiences is an expression of democratic knowledge building. Especially when we compare it to a more common alternative where you have to become a patient and communicate with a medical professionals if you have problems. The classic patient-doctor relationship is filled with power imbalance, yet still with a strong sense of trust. There is a clear expert. But sometimes the respons from medical professionals to women’s concerns might be misplaced. Hearing that you are normal or healthy when you experience that this is not the case the respons will seem dismissive, and that your troubles are not taken seriously.
But coming back to a digitized equal sharing and caring — what needs to be considered in this format? Well for once, individuals with undefined knowledge backgrounds giving each other medical advise needs to be problematized. When looking into the comments we tend to see a battle of opinions between “classical” and alternative medicine advocates. Criticizing the other sides’ advice on how to treat an ailment.
“Am I normal?” Women’s insecurities surrounding the visual appearance of their genitals
As mentioned before, there is an increase in FGPS due to women not being satisfied with how they look. Research shows that women are not always aware of where their idea of an ideal or normal vulva derive from. So what visual information resources are available, that may influence women (and men) on their idea of normal?
Women do express concerns on available visual and educational material (Howarth, Hayes, Simonis, & Temple-Smith, 2016). They point out the problematic situation of the homogeneity of images of vulvas on the internet. Porn is seen as a source of influence, rather than factual. Sexual education is seen as a reliable source, but is also presenting homogenous visual representation of vulvas.
There are also statements from women telling that they are using images to self diagnose. An important fact when considering how to evolve visual communication on this topic that is sustainable.
Other statements are of situations when individuals are looking at schematic images of vulva anatomy. It is likely that the visual information is confusing to the viewer. Simplified anatomical illustrations may be good in some cases, but often they are so different from real life you don’t know what is what in reality.
Visual and textual information have in some cases left women feeling unsure and with more questions. There is also evidence that patients and health professionals do not share the same words and terminology for women’s genitalia. This also causes misconceptions and halting communication (Howarth et al., 2016).
To better understand how women search and find information we conducted a digital survey in Sweden. We got 500 participating women, between the ages of 20–81 years old with a majority in their 30s. On questions regarding where they would search for information about the vulva, over 60% chose digital sources operated by primary official health actor or actors with very trustworthy reputation.
On questions regarding where they would search for information about the vulva, over 60% chose digital sources operated by primary official health actor or actors with very trustworthy reputation.
What attitudes do women express in relation to their genitals? Fahs (2014) analysed 20 women’s narratives about their genitals. She found that women often used negative or strong language in relation to their genital and pubic hair. Saying for example that it is ‘something that needed to be controlled’ as well as expressing anxiety in general.
Digital design matters in women’s health
As digitization continues to influence all areas of society, discourse taking place in either digital or physical spaces merge into everyday lived experiences of individuals. Recent ethnographic research points to the importance of understanding contemporary cultures by acknowledging and studying multiple overlapping sites where people spend time. Also highlighting the fact that online and offline interactions have become fluid. Further arguments are also made that online is a place that is redefining people’s relationship to other individuals as well as to institutions (for example health care institutions)(Hallett & Barber, 2014).
DESIGN CASE: A 3D Visualization project on variations in vulva appearance
During 2017-2018, RISE Interactive together with Sibship designed a first proof of concept on how interactive 3D visualization could communicate variation in vulva appearance. Also including information on anatomical functions and common misconceptions.
The prototype was tested and evaluated with different stakeholders. Results indicate that the application’s feature of alternating between appearances and skin tone gives users a space to discover and re-evaluate assumptions about the physical attributes of a normal and/or ideal vulva. Such as what functions the labia minora and labia majora has and how much they can vary in appearance.
A space with great innovation potential
Thanks to more powerful and accessible technology making it more easy to design visualized education material and put visualisation to new purposes, we see that ICT as a material has the potential to facilitate a more sustainable knowledge building regarding women’s health.
We have just started to explore how digital education might contribute to more positive attitudes and sustainable knowledge building — and reduce body stress, tabu in society and culture, and the lack of self esteem and insecurities.
Generating ideas and design projects from other perspectives than a medical and/or technical perspective is exciting. Hopefully we will see more smart and unexpected applications of digital design in women’s health in the years to come.
Howarth, C., Simonis, M., Hayes, J., & Temple-Smith, M. (2016). ‘Everything’s neatly tucked away’: young women’s views on desirable vulval anatomy. Culture, Health And Sexuality, 18(12), 1363–1378. doi:10.1080/13691058.2016.1184315
Hallett, R. E., & Barber, K. (2014). Ethnographic Research in a Cyber Era. Journal Of Contemporary Ethnography, 43(3), 306–330.
Fahs, B. (2014). Genital panics: Constructing the vagina in women’s qualitative narratives about pubic hair, menstrual sex, and vaginal self-image. Body Image, 11210–218. doi:10.1016/j.bodyim.2014.03.002
I am constantly searching for input on this line of thought — so please engage and leave a comment on how ICT as a material might be shaped in new ways. Or thoughts on new ways to conduct research in order to inform innovation and design processes.
This research was done in 2017/18, during my time as an Interaction designer and project manager at RISE Interactive — Research institutes of Sweden.