January 21, 2021

Empowering

(Constraining)

“Design is a funny word. Some people think design means how it looks. But of course, if you dig deeper, it’s really how it works.” Steve Jobs

“ Design is not about products. Design is about relationships.” Hella Jongerius

The theory and practice of medicine advances every day in seemingly astounding ways. And yet, our conventional ways of thinking - doing allopathic medicine have yet to catch up with parallel discoveries about in other fields such as complexity science. Established testing diagnostics for example, must bracket complexities of the human organism in order to focus on particular variables. This relatively “flatland” approach, in reducing subtlety, yields partial clarity. Like any allopathic approach, these diagnostics bring interventions from the outside into the body. They have their benefits (precise quantification) and their costs (unintended consequences) which must be weighed continuously and on a case-by-case basis. What may look like a reasonable balance of benefits and trade-offs in today’s context may well appear outdated or even misguided in future decades.

Performer, health educator, author and friend Terri Kapsalis’ book Public Privates: Performing Gynecology from Both Ends of the Speculum explores the representational, cultural and political dimensions of the gynecological examination. Working as a health counselor in the oldest women’s run health clinic in the United States, Kapsalis has an intimate understanding of the trepidation that - even decades after the publication of Our Bodies Ourselves - still accompanies the pelvic exam, and the degrees to which women are willing to go to avoid it. Terri made me aware of an exciting health design research product launch called Speculus that aims to reinvent the gynecological screening experience.

While screening of women’s health risks via mammography remains controversial with regard to efficacy, relative risks, and accuracy, Pap smears have a high accuracy rate and lead to early discovery and treatment of cervical cancer. Despite this, Pap smears have a low patient compliance rate. Designed artifacts play an important role in scripting of diagnostic encounters. Consciously designed scripts for diagnostic experiences are beginning to challenge the unacknowledged assumptions of how and by whom screening diagnostics are performed. One such project, Speculus, has qualitatively enhanced the gynecological examination by making power relations transparent and by redesigning the service and delivery model to facilitate earlier and more widespread detection of cervical cancer, the second most prevalent cancer among women today. Maja Kecman, design engineer and founding principal of Speculus explains, “More than three-quarters of cervical cancer cases worldwide occur in the 25 to 64 age range. However, screening via a Pap smear test for early detection means that it has one of the highest survival rates of the common cancers seen in Britain. The test, however, is not pleasant and many women report discomfort, embarrassment or lack of time as reasons for not attending appointments for their regular Pap smear check-up.” (Kecman)

Ms.Kecman established Speculus in the U.K. in 2011 as a joint venture with OBG Pharmaceuticals in order to bring a home Pap test kit to market. Several questions led to her design intentions: 1) Does the Pap screening process really have to be so unpleasant? 2) If she found the screening test so disagreeable, might other women feel the same way? 3) Besides the awkwardness of the diagnostic interaction, what might be some other reasons that many women go untested? 4) How to design a way for women to overcome their reticence to regular testing in order to identify cervical cancer at the earliest stages possible? Kecman’s guiding question became ‘Can the diagnostic experience be redesigned so as to avoid inadvertently reproducing the roles and interfaces that can lead to fear, trauma and avoidance on the part of the “patient” (subjects/health seeker)?’

Like any artificial mediation, the speculum, the tool used to examine the uterus, has evolved, becoming more less crude and ever more refined since its invention in the 1840’s by physician and inventor James Marion Sims. Originally fashioned from two kitchen gravy spoons, the basic duckbill mechanism of the speculum, used to splay open the walls of the uterus for examination has, like the canoe paddle, been subject to numerous incremental modifications over time although the original design patent has remained essentially unchallenged.(Eveleth). Reflecting as all artifacts do, the norms and customs of its time in history, the history of the innovation of the speculum is controversial because it was originally prototyped and tested on indentured slave women in the mid 19th century, many of whom were subject to the barbarism of medical treatment without benefit of anesthetics available at the time.

Contemporary innovations to specula substitute plastic for the jarringly clinical clickety-clacking stainless steel of earlier models. Some models now incorporate bright LED lights into the speculum itself thus eliminating the need for external examination lights and focusing the tasks of the clinician on the examination. If the form of the speculum is well-suited to its purpose then the crux of the design challenge cannot be confined to formal, ergonomic, or technical performance enhancements. Taking advantage of new materials and technologies but going far beyond factors of form and materials, the unique value proposition offered by Speculus encompasses radically human-centered service, delivery and experience design. Continuous improvements to performance in service of the patient experience not withstanding, the conscious design genius of Speculus was in recognizing that the basic underlying assumptions surrounding the experience of the gynecological exam were themselves outmoded and in need of innovation. From an integral perspective, we would say that ergonomic factors and technological improvements although necessary, are insufficient in themselves. The Speculus Project focuses instead on the how the speculum as an interface mediates the relationship between the clinician and the patient (the intersubjective), as well as the behaviors of both the clinician and the patient (objective), and between the patient and her own body (the subjective).

In order to innovate around existing assumptions about the experience of the gynecological exam, the Speculus Project re-choreographed the power dynamics. The design strategy of the Speculus team proposed that there was much to be gained and little to be lost by eliminating the role of the clinician from the conventional screening exam script. By re-conceiving of Pap smear testing as an intimate, self-guided experience that takes place within the comfort and privacy of one’s home, the experience is expanded beyond the strictly diagnostic. The “patient” role is expanded from passive subject to empowered self taking responsibility as participant observer with/of her own body - yet without any loss of diagnostic accuracy. Self caring plays an active role in the continuous maintenance of health and well-being. And continuous learning is supported by becoming intimately familiar with the complex cycles and unceasing changes of the dynamic bodymind system.

Design tools, frameworks and practices are forms of power. “Speculus designs, tests and manufactures a device that allows women to self-administer a Pap smear test in the comfort of her own home. For those women for whom visiting a clinic is either inconvenient, distressing or embarrassing, it will allow regular screening and thereby increase the chances of early detection of cervical cancer. The device is safe, reliable, and easy to use. With clear instructions, this device is easy to use and should be as accurate and reliable as smears taken by a nurse.” (Kecman)

I asked Maja Kecman to reflect on what she has learned from her experience of reframing the screening experience and the “patient” experience, and key take-aways from the research effort thus far… “We have now built a team of clinicians, regulatory experts, designers and business developers to make the home Pap test kit a reality. With investment from OBG, the kit was put into small scale production in order to carry out proof-of-principle trials with a clinical team in Manchester, UK. The patented device is currently undergoing trials with a leading clinical research team at the University of Manchester and Manchester Royal Infirmary, under the supervision of Professor Henry Kitchener — a renowned British expert in the field of gynaecological oncology.” Speculus home test kits are expected to be approved and ready for market in xxxx




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