When Human-Centered Design and Patient-Centered Research Come Together: Designing Digital Tools for Women’s Reproductive Health

Raelynn O'Leary
Dezudio
Published in
7 min readSep 29, 2021
Image of a diverse group of women in a group

Over the past several years, we’ve spent many hours talking with women about pregnancy and family planning. Through these conversations, we’ve developed a greater appreciation of how our reproductive lives play out — like a long, winding, and mysterious journey. We navigate through phases of planning, trying, preventing, and being ambivalent. We experience emotions ranging from deep longing, to elation, to despair. Sometimes those emotions don’t feel rational. Women talk of feeling at the same time well-supported and deeply alone. We’ve spoken with individuals who feel certain they don’t want to have kids, but still feel pressure from loved ones and even their doctors not to rule it out. We’ve had conversations with those who desperately want to get pregnant, but don’t see it as a possibility, given their life’s circumstances. When it comes to making decisions related to reproduction, we can have all the necessary information and make decisions accordingly, while still hoping — at some level — for a different outcome.

We were first introduced to Dr. Sonya Borrero from the University of Pittsburgh in the winter of 2015. Dr. Borrero and her colleagues at the Center for Women’s Health Research and Innovation (CWHRI) are focused on advancing reproductive health equity. It’s well documented in the research that low-income women and women of color receive less support during their reproductive journeys, resulting in poorer outcomes. This team of clinical researchers conduct and translate research to inform clinical practice and policy with the aim of advancing equity in health, with a particular focus on marginalized populations.

Through our work with the CWHRI team and other researchers, we’ve learned about a shift toward a patient-centered approach to conducting clinical research and have come to appreciate the synergies between that work and our own human-centered design approach. This movement in healthcare research is based on the “growing consensus that patients should play a more active role on research teams to ensure that the perspective of the patient is represented and understood.”¹ In other words, healthcare services can be delivered with better outcomes if the needs and lived experiences of the target populations inform — and even drive — what topics are researched and how. At CWHRI, women in the target populations are invited onto research teams to help enumerate guiding questions for research topics, to design and evaluate research studies, and to ensure that interventions are not only evidence-based, but also tailored to real-life needs and values that are identified from the bottom up.

Our first collaboration with Dr. Borrero and her team was an intervention to help marginalized women decide whether or not they wanted to undergo tubal sterilization (also known as “getting your tubes tied” or “tubal ligation”). As a population, women of color have endured an abhorrent history of coercive and forced sterilization practices. And yet — in part because of that history — many women of color today face healthcare coverage and policy barriers to receiving the procedure when they want it. The goal of this tool is to help individuals make decisions about sterilization that are informed and aligned to their values. With the support of an NIH grant and in collaboration with partners at Neoforma Design and Wahila Creative, Dezudio designed MyDecision, a decision support tool for women considering sterilization. This project introduced us to a space we’ve come to care deeply about, which lies at the intersection of our skills, competencies, and interests: decision support tools for women’s reproductive health.

Image of the MyDecision app on an iPad
MyDecision provides women with information about sterilization and other birth control options and a space to reflect on their values. The goal is to help individuals make informed and values-concordant decisions about whether to undergo a sterilization procedure.

After MyDecision, we worked on the MyVoice family planning tools for women with chronic health conditions: MyVoiceCF for women with cystic fibrosis in collaboration with Dr. Traci Kazmerski, and MyVoiceRheum for women with rheumatic diseases in collaboration with Dr. Mehret Birru Talabi. We’ve also supported ongoing design and development work on MyHealthyPreganancy, an app developed by Dr. Tamar Krishnamurti to mitigate risks for at-risk populations of pregnant women through the integration of patient-entered information and machine learning. We continue to work with the team at CWHRI on new concepts, developing their suite of FemTech tools focused on decision making, period tracking, pregnancy, and postpartum health.

Image of the MyVoiceCF app on an iPad
Image of the MyVoiceRheum app on an iPad
The MyVoice tools provide information tailored to women with cystic fibrosis and rheumatic conditions as they consider their options for pregnancy and parenting. The tools provide disease-specific information regarding pregnancy, breastfeeding, contraception, and medications, and help women with family planning informed by specific considerations related to their health conditions.

As designers and ardent believers in the powers of human-centered design, we have been struck by the parallels and opportunities for synergy between the way we work and the patient-centered approach to clinical research. One thing we noticed right away was how our design research methodologies nicely complement the qualitative research our clinical research partners typically conduct. Across these projects, the process we follow varies somewhat, but all include early formative interviews with women in the target user population. Each project team includes patient stakeholders who are creatively engaged throughout the entire process, reviewing and providing input on each design iteration. We facilitate evaluative sessions with members of the target populations to understand what’s working well, what’s not working, and what’s missing in order to make necessary course corrections prior to launching the interventions as part of clinical trials.

Throughout our research activities, our clinical research partners bring a deep understanding of the health-related challenges and questions their communities face. They are experts in understanding the complexities of health-related decisions, and in identifying critical themes in patient’s values and behaviors. We bring a complementary set of design-oriented questions and research activities, and we experience participants’ perspectives through the lens of a designer. Our involvement helps ensure that the team walks away with a realistic and tactical view of how the proposed intervention should be designed and implemented to best meet the needs of its audience.

We’ve also observed a strong synergy between our work and the work of our clinical research partners in how we find ways to communicate important health content to the communities we’re designing for. Women’s reproductive health is a topic rife with complexity and misinformation. Sometimes the sheer volume of content is overwhelming, and somehow it still can be a challenge to find information that feels relevant. While the urge to pare back and scale down can be compelling, we’ve heard from women over and over again that they really want information — as much as they can get their hands on. But they want it in a way that’s not dumbed down; in a way that is clear, vetted, streamlined, and organized. They don’t want to feel coerced or pressured, and they want the information they need to take steps or make decisions that work well for them based on their own individual values and circumstances.

Image of MyVoiceRheum research participant quote: “It feels like it’s being helpful, without much of an agenda.”
In evaluative research on the MyVoiceRheum tool, participants felt that the tone was informative without being prescriptive. They appreciated that it gave them the facts and let them decide for themselves about what’s right for them.

By following the tenets of patient-centered research and human-centered design, we’ve been able to identify what information is most critical to women as they navigate reproductive choices and family planning. We’ve worked with clinicians to distill and communicate complex medical information to ensure that it is understandable and actionable. In evaluations of MyVoiceCF and MyVoiceRheum, we’ve been overwhelmed by the positive response from women who previously felt left out of discussions of pregnancy and parenting options, and certainly have never come across a consolidated resource to help them consider pregnancy and parenting through the lens of their particular condition.

Image of quote from MyVoiceRheum Research participant: “A lot of times people in the chronic illness community feel isolated. As someone with an autoimmune disease that took a long time to get diagnosed and wasn’t listened to, just having these kinds of things tailored to my community feels pretty emotional to me. Tools that normalize living with a chronic illness or disease and provide resources and support are important.”
In evaluative research on the MyVoiceRheum tool, participants expressed a sense of gratitude over the creation of a tool that fills such a pressing need for their community.

As a women-owned and -operated design business, we feel privileged to collaborate closely with clinical researchers working to create interventions to help women navigate their reproductive journeys. Design can play a powerful role in bridging the gap between the needs of the women these interventions are made for, and how they’re executed. Working together, designers and clinical researchers can bring the women to the table in meaningful ways to drive their design and development for maximum fit and impact. We advocate for design involvement in clinical healthcare research, as we have seen firsthand how patients, designers, and clinicians all tackling a problem together can foster a process where an intervention is deeply grounded in what patients want and need. We’re encouraged by the patient-centered research movement in the clinical domain, and are eager to continue investigating how it integrates with the philosophy and methods of human-centered design.

Special thanks to the team at CWHRI, for their continued collaboration and all the work they do in women’s health research, education, practice, and policy. Also, thanks to Sevaa for providing development expertise and continued technical support on these projects. And, finally, a million thanks and claps to Ashley Deal and Hannah Koenig, my co-authors on this article!

¹ Johnson L.B., Smalley J.B. (2019) Engaging the Patient: Patient-Centered Research. In: Hall K., Vogel A., Croyle R. (eds) Strategies for Team Science Success. Springer, Cham. https://link.springer.com/chapter/10.1007/978-3-030-20992-6_10

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