Polycystic ovary syndrome (PCOS) is the most common hormonal and metabolic condition that women face, affecting up to 20% of women in the United Kingdom.
Most women who have the condition won’t know until they are in their mid-30’s — which in some cases can be too late to stop the negative long-term effects of PCOS. A medical condition affecting such a large portion of the population warrants a standardized testing system through the government (similar to cervical screenings) — but currently, one does not exist in the NHS. The goal was to promote young women to begin screening for symptoms of PCOS earlier in a modern and accessible way.
The components of this project include:
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A branded campaign that educates young women in the UK, and primes them to receive a screening kit for PCOS where they can collect saliva samples to take to a GP.
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In depth research on PCOS stakeholders, patients, healthcare markets, and endocrinology.
DETAILS
Masters thesis at RCA and Imperial College supervised by Weston Baxter and David Boyle
RECOGNITION
Exhibited in Global Grad Show at Dubai Design Week
Shortlisted for Innovation RCA Accelerator Program
IDSA Member Spotlight
Dubai Design Week Project Spotlight
Part 1
Campaign and Symptom Screening
Guerrilla marketing campaign
Full campaign video displays content that some people may find uncomfortable. Link to full video supplied upon request.
Impactfully informative messaging
Most people (including GPs and patients) are uninformed about what symptoms are related to PCOS. Campaign content was designed to preface the symptom screening kit to educate the general public and spark interest in potential users. Inspired by anti-tobacco campaigning and Gardasil vaccination promotions in the United States, a provocative but informative approach was taken to create Ova’s own advertisement.
Relatability is a successful marketing cue (especially seen in the aforementioned campaigns) that engages the target audience to build empathy for the cause by depicting a protagonist similar to them. For the modern UK teen, a short video was made in a Wes-Anderson-meets-Skins style (on a budget), and blended humor with seriousness. The activities of the protagonist in the video 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 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 the selection of actors and environments, to drive home the point of directly addressing under-served communities. It was made in collaboration with Simon Ryninks, a filmmaker and director in London.
The symptom screening kit
Education and action
A screening kit was created as a birthday present that is sent out by the NHS to young women’s homes. Sending content to registered individuals on a specific date of birth 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.
Unique to other things sent by public healthcare organizations, this kit removes the idea of clinical sterility, and uses visual branding that engages younger audiences. The goal was to be informative, and to use color as a prominent indicator/differentiator of information.
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 explains their relation to hormonal imbalances caused by variable communication between the brain and ovaries. The information in the screening kit 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).
Ultimately, it promotes young women to make take responsibility of a portion of the diagnosis process by having to swab their own saliva. The intent is also to encourage users to schedule an appointment with their GP to begin user-initiated demand generation around PCOS healthcare.
Part 2
Design Research
Scope of Stakeholder Research
Understanding the System
Identifying the gaps in communication between patient, doctors, drove key insights for the new campaign proposal.
Understanding the Science
Understanding the problems associated with PCOS meant learning about endocrinology.
Understanding the User
Women with PCOS were interviewed to clearly identify patient archetypes, and define a new patient experience.
Understanding the Market
Scoping out the current products and services related to regulating hormones made clear how underrepresented this condition is.
SME
Gianpaolo Fusari (Helen Hamlyn Centre for Design)
Dr. Zahra Ameen (Women’s Wellness Center, NHS)
Nick Coutts (RCA Service Design)
The System
How does the current UK public healthcare system communicate about products and policies to others?
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, privatized healthcare companies market medical products and services in the consumer sector to bypass clinical obstacles and accelerate access to users (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.
Clinical Contacts
Dr. Channa Jayasenna (Hammersmith, NHS Imperial Trust)
Dr. Stephen Franks (St. Mary’s, NHS Imperial Trust)
Dr. Zahra Ameen (Women’s Wellness Center, NHS)
The Science
Understanding endocrinology
In order to understand the depth of PCOS from a clinical perspective, I reached out to two endocrinologists and a GP, who worked across public and private healthcare. They helped me distill the key symptoms of PCOS, as well as the reasons why women aren’t tested sooner.
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PCOS is made up of seven major symptoms, of which you need 2-3 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 are still in early phases of research.
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Excess hair growth on face/body
Irregular/dramatic weight gain
Excessive acne
Irregular menstrual cycles
Irregular ovulation
Excessive hair loss on the head
Cysts in ovaries (sometimes)
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Not enough research
Symptoms are told to be part of a temporary pubescent phase
Symptoms are misassociated with vanity or “part of being a woman”
Symptoms fluctuate throughout a woman’s life, making it difficult to document/monitor them consistentlyDescription text goes here
The reality is that a clinical diagnosis can only be made after an initial check for symptoms is conducted and monitored over time. In order to initiate the process of PCOS screening earlier, women need to be given standardized tools that are informative and easy to use.
Public vs Private Healthcare
Patients that access public clinics for PCOS symptoms are usually less informed about the condition and have taken oral contraceptives to alleviate hormonal imbalances, whereas patients who access private clinics are given information and opportunities to mitigate the condition with healthier lifestyle choices.
Combination treatment efforts
The two most common treatment options for PCOS are weight loss (lowering glucose levels) and hormone therapy (regulating period cycles and hair growth) — however, these are not consistent solutions for every patient.
Patient Outreach
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 for 1-2 hours, while fourteen others were informally conversed with for < 1 hour.
The User
Patient research
Interviews were conducted with women who have both been diagnosed with PCOS. As PCOS is a complex condition with fluctuating variables, conversational interviews were conducted to focus on soft communication, like body language, tone, emphasis on certain topics, etc. 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 abstracted here.
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.
Four patient archetypes were developed from the research findings.
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She gets diagnosed typically during her mid 20’s and 30’s that finds out due to fertility issues.
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She gets diagnosed in her teens, is educated enough about the condition, and increasingly monitors it over time.
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She has symptoms that are difficult to concretely identify, and she gets either misdiagnosed or misguided about treatment options, and ultimately experiences compounded symptoms of PCOS that appear with age.
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She is engaged and informed about her PCOS symptoms early on, and she has a consistent understanding of how to mitigate the condition throughout her life.
The goal of the primary and secondary patient research was to understand the common stages in each journey of being diagnosed with PCOS, and visualize the points of friction with patients 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.
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.
SME
Talya Porat (Imperial College)
Dr. Zahra Ameen (Women’s Wellness Center, NHS)
The market
Hormone testing
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.
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Testosterone levels are usually elevated in patients with PCOS, thus resulting in symptoms like excess hair growth.
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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.
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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.
SME
Nick Coutts (RCA Service Design)
Jack Mama (Studiomama)
Service Blueprinting
Co-creating a roadmap
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 roadmap that illustrates the operations of each actor necessary to conduct a product rollout. 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 illustrates the basic continuation of tests, and includes a potential involvement of a charity or NGO to be involved with users further.
Reflection
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 complimentary stakeholders, thus opening a new stream of communication with external bodies. 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. With additional time, this project could be further developed by comparing 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 wide range of girls 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.
Value propositions
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.