HCI and Intimate Care as an Agenda for Change in Women’s Health

HCI and Intimate Care as an Agenda for Change in Women’s Health


– I hope you can see me. (laughs) So, yes, I’ll be presenting this paper, HCI and Intimate Care as an Agenda for Change in Women’s Health, on behalf of my co-authors, Rob Comber and Madeline Balaam, my PHD supervisor. We’re based at Open Lab. Sorry? Closer? Okay. Like this? Oh, okay. Thanks. So, this is the research’s– it’s looking at designing
for women’s health care as an under-explored area of HCI, particularly outside maternal
health-related systems. It’s also looking at the quality of care and key issues affecting women’s health, as well as the positioning of women and their bodies within society. These concerns are first motivated by an existing technology, the speculum, which I will use to establish parallels with a variety of women’s health issues. The main case study that
you will find in the paper is focused on urinary
incontinence in women and an observational work in a women’s health
physiotherapy consultation. So I’ll briefly mention the study. I will mention technologies
in use, for example… There’s a lot more
description in the paper if you’d be interested in looking at it. I’ll continue by looking at what designing for women’s health and having intimate care in
mind you could all consider and our hand, I will end by looking at possible areas of intervention and some design
provocations to sum up ways HCI can possibly have a
significant contribution. So, when talking about women’s health, we contemplate issues such as
menstruation and menopause, cervical or breast cancer, STD’s, intimate partner or sexual violence that might include genital–
female genital mutilation and reproductive freedom in
terms of choice and rights. And we look at the potential for HCI to positively improve the
options and experiences available to women
within this very context. So, as I just mentioned,
we motivated our concern by using the example of
the vaginal speculum, which is a medical
gynecological instrument developed during the 19th
century that has seen little design or technological
improvements since then. It’s a medical device that can be made out of plastic or metal and it’s used to dilate the vaginal walls to enable inspection of the cervix, usually within a consultation. This is a technology
that gets its job done and I’m quoting Rossmann here, its design takes little or no account for the experiences of women upon which it is used. Research has showed that
while this is a test which takes only minutes to perform, it is a test that is
considered to be unpleasant, embarrassing, fearful, painful, or uncomfortable by most women. Some studies also
challenge the conventional medic nurse-patient relationships by showing that self-insertion
is an acceptable, innovative, simple,
and cost neutral change in clinical practice that
increases women’s comfort and satisfaction. For example, while HCI
research has looked at sex toys as a pinnacle of
experiential technologies, we are arguing that the
design of tools and techniques for women’s health are the opposite. They are devoid of concern for the experiential
qualities of care and touch. And this work that I’m presenting here now aims to open the discussion towards that. So, our case study… In wanting to start this conversation, we’ve drawn a case study
of a body disruption, urinary incontinence in women, and illustrated the
experience of women’s health both from the perspective of
the patient and the therapist. This observational study took place at a clinical specialist practice in women’s health located at a local NHS research hospital. This happened during a period
of eight months in 2014. So basically with this
field work, it allowed me to familiarize myself with
current medical practices, the assistive devices in use, approaches in dealing with patients, and a general knowledge of a wide range of medical conditions that relate to pelvic health care in women So, pelvic health continence
care, incontinence. What is incontinence? In women, and I’ll
quote Margrit Shildrick, incontinence is neither an illness nor strictly a medical problem, it’s labeled a body description– a bodily dysfunction
rather than a diagnosis, a social, rather than
a biological pathology. As an example, in the
UK alone, it’s estimated that 14 percent of women have
incontinence-related issues. And, of course, this is
accounting for the women who actually look for medical support. While observing this practice, I had the opportunity
to see the approaches used by the physiotherapist
on how she was explaining pelvic floor and pelvic
floor muscle exercises to women patients. The way it happened most of the time was that the physio would
sometimes perform a manual exam to access the pelvic
health, while other times, especially if it was a first consultation, she would show what
you see there on screen towards the right side. She would show a cross-section of the female pelvis to explain where the pelvic
floor and pelvic floor muscles were situated and how
they should be exercised. There’s a description on what
the pelvic floor muscles are. They do support the part of the body that goes from the pubic bone in the front to the base of the spine at the back. They are the muscles in our bodies. They help to hold the bladder,
womb, and bowel in place, and they help maintaining bladder outlet and back passage closed. For example, they are the muscles that are actively squeezed when we laugh or we
cough, and if we do that, laughing or coughing without leaking, that means our pelvic floor
muscle is actually strong enough to prevent the leaking from happening. This is just an example on how the physiotherapist would explain how to do these pelvic
floor muscle exercises by pointing out on the cross section. You can see I included a little animation here. Right. Just to simulate… Oops. Okay, I’m doing
something wrong. Sorry. Right. So, just to simulate what a contraction, relaxation of those muscles
should kind of look like, because you can see in the
cross section, actually, those muscles are not present so when… When she would explain or when she would say to
imagine the vagina like a tube, start squeezing from the back
passage to the front passage, do not hold your breath, squeeze, hold, count up to 10, 5 seconds, relax, do it three, four times a day. This would be explained by
looking at the cross section which doesn’t even have
the muscle body on it. Here you can see some of the devices and technologies used for continence care. Either they’re devices for
maintaining continence, such as the vaginal cones and the probe, or to diagnose incontinence, and that can include
again the vaginal speculum and the Sims speculum. And the Sims speculum is
actually the medical device usually used to check prolapse, which means checking to see whether any pelvic organs, such as the bladder or uterus, are slipping forward or down. Something that I found quite
interesting at the time was that the physio actually
commented that for her, using this device was something
that made her feel uneasy due to the required technique of use, which is the woman patient needs to be lying down and sideways and the physio needs
to insert the speculum while standing behind her, which she considered a
very dominant position that doesn’t allow for visual contact or engage in a conversation and that the patient
is just very submissive and she feels like she could do anything. So, basically it is a device
that gets its job done but it is designed to be
ergonomic for the people using it rather than the people receiving it. However, it doesn’t really account for the experiences of either one. It makes both feel vulnerable eventually. So, of course this research
embraces feminist approaches to the body, and looks at the body as something that is
understood as a site in flux. And I’ll quote Shildrick again, as in, “the body is a fabrication, “it is organized “not according to an historically
progressive discovery “of the real, but as an always insecure “and inconsistent artefact, “which merely mimics material fixity.” For example, being ill or unhealthy is characterized by a
lack of bodily control, a body disruption that
happen at any given time and can be made visible
in many different ways. There are some critical
approaches across disciplines from art, design, science, and technology, that most recently been giving visibility to women’s bodies. One such example is The
Great Wall of Vagina. It’s an art-based
intervention that contributes to create generalized
awareness of body taboos. It elevates intimate body parts which are typically confined
to one’s private realm and removed from public view. It actually brings it to
the white-walled gallery and media in general. It’s pushing boundaries to self-knowledge in bodily awareness and highlighting the
uniqueness of the body. It focused on a cultural taboo, in this case that of the vulva, the common sense vagina,
quoting Eve Ensler, as its main and only material. Which– Same, same but different, like Labella, which I presented in an
earlier session today. Labella is an augmented system that supports intimate bodily knowledge in pelvic fitness in women. It’s also using the same cultural taboo as design material as it’s looking the external genitalia and further on into the pelvic
floor and pelvic fitness. On the other hand, most
of the technologies they do configure their user as a consumer and not as an active participant though the rise of DIY approaches are turning everything a
little bit more accessible and there’s an opportunity for change, that kind of situation. For example, FeedFinder. It’s an app, it offers
an alternative approach to finding places to breastfeeding
women in public spaces. It empowers members of that community who probably share the similar concerns to contribute their knowledge by reviewing locations on a mobile app. Along the same lines of DIY is this project the Gynepunk Lab. It’s a DIY gynecology project where there’s a collaboration
across disciplines to develop open-source
tools for DIY diagnoses in first aid care in support of women to take control of their
reproductive health. As part of this project– (laughs) Gaudilabs, or Urs Gaudenz, specifically developed
the 3D printable speculum which aims, I’ll quote, “to democratize and
liberate the instruments “and protocols used in
obstetrics and gynecology “to allow low-cost diagnosis.” It might do so, still, it is a technology
that gets its job done, and we can only wonder and hope that maybe this technology
will be upgraded some time soon to improve women’s
experiences on this front and at some point, just relegating the
traditional speculum for good. The next speaker will
talk about this project with a lot more detail. (laughs) Basically, it was at a breast pump event in which commercially
available breast pumps were appropriated and reconfigured so that they would offer
a better experience for women who are using them. In conclusion, women’s experiences matter and we should stop being
embarrassed about the female body and start responding to this concern. HCI definitely has the potential to contribute to this space greatly and this is a positive
challenge to HCI design. Just one example, going
back to our case study of urinary incontinence in women, how about, for example, a technological innovation
in wearable sensing, one that might combine smart textiles with analysis on wear or fitting. And I’ll just leave you with some hashtags to add to these other hashtags
spread through the building on topics on women’s related health issues that are taboo and/or under-represented
in HCI design and research. And, thank you. (audience applause) – Questions? – Hello. I want to thank
you for a lovely talk. And I just wonder if you
can comment a little bit. One of the things that really struck me about the situation that
you were describing is, especially when you
talked about the example of the Sims speculum and the person who was using it being in the dominant position but feeling very uncomfortable and, um, the whole idea of it, empowerment, in this case, would be taking power away from the person in the dominant position and I feel like that is something that has a lot of opportunities
for various contexts in HCI so I find that to
be pretty interesting. – Thank you. So, so– This physiotherapist that I was observing, she clearly thinks that most of these devices need to be redesigned
for different reasons. The Sims speculum in particular because it makes her feel vulnerable because precisely that
she’s in full control. She didn’t have, at the
time, any suggestions so it’s not like she knows what she would like to have but she knew that she was
uncomfortable with it. And other people I’ve talked with since when commenting on this,
they mention the same thing. Like, when they go through medical school, whether they’re using it
now, as medics or not, at that point in time when they
have to learn how to use it, they find it really, really awkward. But it’s the kind, just
like the vaginal spectrum, it’s a technology that’s
been there forever and it hasn’t changed because, in the end, it’s all it’s needed to
either diagnose prolapse or diagnose what else
needs to be diagnosed. (laughs) – Any other questions?

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