An early stage screening kit for symptoms of polycystic ovary syndrome.
Global Grad Show at Dubai Design Week, 2019
IDSA Member Spotlight, 2019
Shortlisted for Innovation RCA Start-up Accelerator, 2019
Polycystic ovary syndrome (PCOS) affects up to 20% of women in the United Kingdom, yet most women either get diagnosed later than they should, or get misdiagnosed because of the fluctuating nature of the condition’s symptoms.
A four-part initiative has been designed to address key stakeholders within the public health sector, young women, and communities of PCOS patients to begin systematically screening for symptoms earlier in a playful, accessible, and non-invasive way. The components include (1) a service blueprint that showcases the stakeholder phases and activities over time, (2) campaign material that educates the public and conveys relatability to young women in the UK, (3) a symptom-screening kit that is sent to young women by the NHS in the form of a birthday present, (4) and a mock-up of a digital interface for PCOS patient communities after they get diagnosed.
Each part has been tested or validated along the way based on the stakeholder group that it serves. The aim is to incentivize young women to learn about PCOS, and prompt them to go to a doctor for a clinical diagnosis, if the symptoms they learn about resonate with their daily life. The system was designed to address the transferred agency of health, to reach a more diverse demographic of constituents by implementation in the public sector, and to initiate change within the female reproductive health space.
Royal College of Art + Imperial College London
Supervised by Weston Baxter
London, United Kingdom
Motivation for the Macro Problem
Innovation of products and services that deal with female reproductive healthcare have been historically obstructed from growth due to unfair gender inequality including especially (but not limited to) the realms of user research, science, design, and medicine. Because these industries are siloed in their communication with one another and predominantly gender biased, the resulting policies echo only those interests. For example, public healthcare in the United Kingdom has regulation on clinical products, services, education, and funding, meaning that they typically maintain a closed-loop communication stream between themselves and the lower-tear governing bodies of healthcare — like Clinical Commissioning Groups and Local Trusts, who are primarily run by GPs — thus leaving out the direct input of potential patients and not always understanding what is needed.
To combat this lack of involvement, privatize healthcare markets medical products and services in the consumer sector to bypass the clinical obstacles and to accelerate access to these new ventures (i.e. 23 and Me). While this initiative has an impact, private companies still carry out small and siloed user research. Which means they only serve communities with high socio-economic status and/or a higher educational background.
Polycystic Ovary Syndrome as a case study
I chose to specifically research polycystic ovary syndrome (PCOS) as a case study as it is the most common hormonal and metabolic condition that women face, affecting up to 20% within the UK, and 8% globally. Along with presenting a quantifiable need, it is also a highly multi-faceted condition. PCOS is a made up of seven major symptoms listed to the right, of which you need two to three to be diagnosed. It is a lifelong genetic condition, that can have serious negative effects later on if not diagnosed early and treated appropriately. For example, irregular menstrual cycles cause a build up of the uteral lining, causing hyperplasia, which can lead to endometrial cancer. Endocrinological complexities like this leave PCOS widely misunderstood and still in early phases of research.
excess hair growth on face/body
irregular/dramatic weight gain
irregular menstrual cycles
excessive hair loss on the head
sometimes cysts in ovaries
In order to understand the depth of PCOS, I reached out to two endocrinologists through the Imperial College Trusts, Dr. Channa Jayasenna at Hammersmith Hospital and Dr. Stephen Franks at St. Mary’s Hospital. These discussions led me to understand the main reasons why women are not prompted to test for PCOS in a standardized way, and what hormonal issues are typically overlooked:
PCOS is already clinically difficult to understand, which makes it even harder to explain to a variety of patients in a digestible way
symptoms of PCOS are commonly associated with vanity and temporary pubescent phases, and are treated through superficial ways, though they are actually caused by biological imbalances
early symptoms that affect teens are written off as part of “being a woman” thus subduing any clinical call to action to assess them
symptoms of PCOS fluctuate throughout a woman’s life and are hard to document if not consistently monitored (i.e. you can experience symptoms 1-3 during your teens, and then 5-7 during adulthood)
Additionally, I spoke with Zahra Ameen, who works at the Women’s Wellness Center within the private sector, and the NHS within the public sector. She provided clarity on the realistic diagnosis and treatment options for women. Patients that access the NHS for PCOS symptoms are usually less informed about the condition and have taken oral contraceptives to alleviate hormonal imbalances, whereas patients who access the Women’s Wellness Centre and other private clinics approach mitigating the condition with healthier lifestyle choices. What she concluded is that treatment options are usually a combination effort. The two most common treatment options for PCOS are weight loss and hormone therapy, however these are not consistent solutions for every patient. The reality of treatment is that there can only be a clinical diagnosis after an initial check for symptoms and follow up appointments to monitor them. But to initiate the process of screening for PCOS symptoms, a standardized method of access to those screening tools need to be seamlessly provided to young women.
Hormone Testing in Market Today
Testing for hormonal imbalances is a strong indicator for whether or not a person has PCOS. The most important hormones to test for are Testosterone, Luetenizing Hormone (LH), and Insulin. Testosterone levels are usually elevated in patients with PCOS, thus resulting in symptoms like excess hair growth. The luetenizing hormone is stimulated by ovulation. Usually, LH spikes in a woman’s body during the two most fertile days of ovulation between cycles, but within PCOS patients sometimes LH is at a consistently higher level. This means that when women take an ovulation test they are misguided into thinking they are properly fertile. The last relevant hormone is insulin. PCOS has strong links to type 2 diabetes, and similarly both patients show signs of insulin resistance. It is unclear whether or not the link to diabetes is perpetuated by hormonal imbalances and an unhealthy lifestyle, or if there is a genetic predisposition. Current methodologies to test for hormonal levels already exist, and personalized at-home kits are on the market within private companies. Samples like urine, blood, saliva, and vaginal mucus are used for testing hormone levels. Most of these methods need clinical support to carry out, and the results are mail based with no face to face consultation. Current companies in this market are MediChecks, TCM Healthcare, and ZRT Labs, all of which offer a range of testing procedures.
Of all the methods, saliva testing is the least invasive, and reflects more accurate levels of the necessary bioavailable hormones that are active within organs and tissues, rather than the other methods which only measure the amount of hormones circulating in the bloodstream when gathered through blood tests or serum tests. Tangential studies have been done that reaffirm saliva as a valid biomarker for diagnostic tests of free androgen levels in the body. Additionally, research regarding the genetic predisposition of PCOS uses saliva as one parameter of biomarking, but also validates the use of screening for LH and Insulin as relevant indicators of hormonal imbalances related to PCOS.
Interviews were conducted with women who have been diagnosed and misdiagnosed with PCOS. As PCOS is a complex condition with fluctuating variables, conversational style interviews were carried out to focus on soft communication, like body language, tone, emphasis on certain topics, and questioning. This allowed the interviewees to feel comfortable about expressing a very personal part of their health history. All interviewees personal demographic information and answers remain confidential, and have been shared in an abstracted way. Patients were chosen in one of three ways (1) personally contacted via email or in person by me, (2) gathered through responses from an email sent out by me, or (3) gathered through responses from posting content on social media platforms. Six women were formally interviewed, while 14 others were informally conversed with. In addition to primary research, secondary research was conducted by reading through online forums where women discuss their diagnosis experiences. Discussions on these forums echoed the experiences of the interviews I conducted, and validated the friction points as a potential patient, a current patient, and a misdiagnosed woman. This small-scale qualitative approach has been used by others like Jakob Nielsen and Thomas Landauer, as they’ve shown in their mathematical model illustrating the efficacy of interviewing five users to draw enough action-oriented conclusions from.
Through the primary and secondary research of patients, four main patient archetypes were found. There is Patient 1, who gets diagnosed typically during her mid 20’s and 30’s that finds out due to fertility issues. There is Patient 2, who gets diagnosed in their teens, and is educated enough about the condition and monitored throughout their time with the condition, increasingly as they age. There is Patient 3, who has symptoms that are difficult to concretely identify, and gets either misdiagnosed or misguided about treatment, before figuring out what exactly needs to be done before they experience the negative effects that come with age. Lastly there is the Ideal Patient, who is engaged and informed about her symptoms early on, and has a consistent understanding of how to mitigate the condition throughout her life. My goal with patient research was understand the common stages in each journey of being diagnosed with PCOS, and visualize the points of friction with women with PCOS and the healthcare system. The women were also able to share what they thought their trajectory of progression would be given the circumstances of their diagnosis. All of these elements strongly informed the latter end of the roll out scheme.
Part I : Service Blueprint
Co-Designing with Clinical Experts
The three components of Ova — the campaign content, the screening kit, and the proposal for a digital platform — could only function realistically by designing a road map that illustrates the operations of each actor necessary to conduct a product roll out. A service blueprint was co-designed with several stakeholders as each had a variety of insights on their part of the healthcare service process.
The first third of the service blueprint maps out the activities required for a successful campaign for PCOS education. It was influenced by meetings with Service Design tutors, product designers working in hospitals as medical innovators, Reproductive Endocrinologists from Imperial College Hammersmith and St. Mary’s Hospitals, and consultants from industry.
The second third of the service blueprint showcases the user interactions with the product. It portrays the feedback loops of data collection that the subsidiary organizations of the NHS need to document when prepping for funding based on the needs of their communities. The more kits that are sent out, then the more data these subsidiaries have to collect, and then filter back into the Department of Public Health and the NHS based on the efficacy of women getting checked after receiving one.
The last third of the service blueprint is a working section that will be developed further in parallel with the development of the post-diagnosis digital platform. It illustrates the basic continuation of tests, and includes a potential involvement of a charity (or other organization) to be involved with further treatment.
Part 2: Campaign content
How to Inform Along the Spectrum
As understood from the online forums, interviews, and discussions with doctors, many individuals are improperly informed about what potential symptoms could be related to, let alone those of PCOS. In order to have any success with a product roll out, there needs to be campaign content that informs the general public about the problem, but also sparks interest in potential users. Inspired by anti-tobacco campaigning and Gardasil vaccination promotions in the United States, a provocative but educational approach was taken to create Ova’s own campaign content.
The campaign material is made up of two main components. The first component is a set of visuals that propose common symptoms as quirky and abrupt questions. They were posted onto Instagram to test how much attention they got, of which seventeen people directly messaged me regarding PCOS, and three agreed to take part in interviews.
Relatability is another successful marketing cue seen in the former campaigns, that engages the target audience to build empathy for the cause because it depicts a protagonist that is similar to them. For the modern UK teen-to-young-woman, a short video was made in a Wes-Anderson-meets-Skins style, and incorporated humor with seriousness. The video depicts an average morning routine that a young woman would carry out. These activities especially call out the normalcy of the symptoms expressed with PCOS, but also the general confusion or frustration that comes with experiencing them. It follows with an explanation of the booklet in the screening kit. It is meant to educate and provoke interest, without taking an overtly clinical stance.
The video additionally aims to promote inclusivity and diversity in its selection of actors and environments, to drive home the point of directly addressing under-served communities. It was iterated upon and validated by Simon Ryninks, a filmmaker and director in London, as well as with three of the six interviewed patients.
Part 3: symptom screening kit
* Photos of the real deal coming soon!
Visual Communication + Product
After compiling information from the developmental phases, a symptom screening kit was created as a birthday present to be received by the NHS. The kit has less clinical sterility surrounding the process, specifically in its style of branding. It is meant to use visual elements that engage younger audiences, and promote trust within brand identity. Also, a shared personal activity that is usually associated with play is birthdays. Sending content to registered individuals on a specific birthday embeds the roll out within a system that the NHS already has in place, which is to prompt constituents via mail based on their age for other female procedures, like cervical screenings.
The first part of the kit provides information about PCOS and why the NHS is sending the package; the background of PCOS is aligned with the information available on the NHS website. The second section demystifies the superficiality of common symptoms, and relates them back to hormonal imbalances caused by variable communication between the brain and ovaries. The symptom information has been co-designed with and validated by clinical researchers and clinical professionals based on their specific experiences within the public and private sector. The final section of the kit explains what hormones to test for, how and when to swab your saliva, and what to do afterwards. There is a calendar matrix of the three hormones, and three different days that the user will swab their saliva for each. This is because multiple data points will be needed for the GP to see if there were any fluctuations in hormonal levels or if there are consistent spikes (like mentioned previously with LH). It promotes young women to make take responsibility of a portion of this process by having to swab their saliva. The intent is also to encourage users to schedule an appointment with their GP for an accurate clinical diagnosis.
Part 4: Community platform
Mock up of a Digital Platform
The final part of the roll out is a working design towards a digital platform for patients who have been successfully diagnosed with PCOS to continue learning about the condition, track their tests, communicate with one another about treatment, and potentially collaborate with one another or organizations that would be interested in joining (i.e. charities, gyms, nutritionists, physiotherapists, etc.) a process towards a healthier life by mitigating the symptoms together.
Ova holistically addresses different needs of each stakeholder. The value proposition for the main stakeholder groups are as follows. For healthcare professionals, seeing patients earlier for preventative measures will offset the amount of times that patient would have to be seen in the future for post-operative treatment costs. The NHS has shown dedication to this by increase their budget by 3.4% (£20.5 billion increase over 5 years) to provide for preventative care especially for health inequalities, of which prenatal, maternal, and neonatal health was listed, which PCOS falls under. For women, access to things like Ova empowers women by shifting some of the agency from the industry onto the individual, thus encouraging more responsibility of their health. As PCOS is not often talked about, opening up communication between one another, can help women keep on track with their treatment, since checking in with a doctor becomes less frequent until menopausal age.
moving forward: new system proposal
A More Informed Loop with Multiple Stakeholders
Ova aims to show that it is possible to mitigate the unfortunate effects of siloed and unequally-gendered industries that have led to the misrepresentation and under-serving of female reproductive healthcare. The major contributions of this work are identifying ways in which the public health sector can better engage with local communities to provide communication strategies that are usually carried out by the private sector. It spreads the outreach of this cause to hard-to-reach communities who come from a wider range of socio-economic and educational backgrounds than that of constituents that can access private healthcare. In addition, this new system is an initiative that takes a critical step on the path forward to a more engaged community about personal healthcare. It emphasizes to governing bodies to include other individuals and organizations to gain valuable insights from their complimentary stakeholders. Thus opening a new stream of communication with external bodies. The successful on-boarding of Ova can be replicated by other forms of under-served female reproductive health practices. The parameters of time and resources allowed the project to develop to a stage at which digital and physical deliverables are finalized for discussion with industry experts. In parallel, the service blueprint serves as a baseline for how the NHS could to develop this roll out, based on systems already in place for other healthcare services and added activity points for each stakeholder to interact with.
The next steps for this project is to forecast detailed expenditures, and compare short-term and long-term obstacles based on fluctuating budget and resources (i.e. technology, built environment capacity, scientific advancement, etc.). Ova also serves to showcase that medical conditions don’t always need to be addressed in a clinical way. It brands itself as a consumer product with its visual design, and enables a range of citizens to get involved with its light hearted and informative campaign material. At the current stage of this work, I am left with a few questions as I consider accessible healthcare at large. As society develops, specifically within the UK, more advancements in technology and science are flourishing — but who are they serving? Does everyone in our community know that they could benefit from these advancements? And what is being done for long-term preventative engagement of patient agency for their personal health? Further development in the field of healthcare will continue to benefit marginalized groups and conditions with research and design initiatives similar to this.