I was 14 when I assisted my mother in giving birth to my brother, Benjamin. My step father worked the swing shift seven days a week, which meant my mother and I were each other’s primary support systems. After learning she had gone into labor, I arrived at the hospital and found my mom in her hospital room writhing in pain, exhausted, and completely alone. In a low-income neighborhood, this woman giving birth alone, unsupported, without her partner was likely seen by most, as just another statistic. Except to me.
From this experience and many others growing up in our low-income northern California neighborhood, I quickly became aware of the lack of access to care and strong support systems for women like my mother. Without that support, it is much more difficult to get adequate health care, particularly reproductive health care. As a young woman accompanying friends to appointments at free clinics for access to birth control, STI screens, and abortions, I remember feeling ashamed that we were asking for help from adult-centered clinics. I was overwhelmed at the scarcity of resources for this population of young women in my city. This only fueled my growing interest in advocating for women’s equal access to health care.
In 2009 I became a volunteer health worker at a safety-net clinic in San Francisco, the Women’s Community Clinic. This provided a way for me to better understand the needs of my community and to make an impact on the health of underserved communities like the ones I grew up in. As a volunteer, I educated myself about reproductive rights, birth control methods, cultural inclusion, and harm reduction. I was also a patient at this clinic. My overlapping identities as both a volunteer and a patient made me a good candidate to become a member of the clinic’s Client Advisory Council (CAC) where I shared my experiences and contributed to clinic changes. This taught me the impact of patient-centered care and increased my understanding of the issues we face as underserved women.
Patients Are The Experts
Research plays a vital role in understanding the struggles that women encounter when receiving reproductive health care especially with regards to contraception and abortion care. Reproductive research explores ways to empower women to make informed decisions about their bodies and their lives. One project in particular on contraceptive decision making sparked my interest.
In 2012 as a member of the Client Advisory Council at the Women’s Community Clinic, I joined a patient focus group for My Birth Control: Development of a Decision Support Tool for Contraception, a project of The Program in Woman-Centered Contraception at the University of California San Francisco (funded by the Patient‑Centered Outcomes Research Institute). I participated in the development of an iPad-based decision aid that gives women accurate birth control information prior to their appointment.
Some people may ask, what are my qualifications for this work? I am just a lay person, accessing reproductive and sexual health care services in San Francisco. I had no research training, just a commitment to my own health and the health of women more generally.
I believe it is exactly this outsider status, combined with my deep passion for and interest in advancing women’s health that allowed me to bring a unique, expert, and valued perspective to the table. Both the research team and I recognized the benefits of my involvement, particularly because of the nature of the research — a study of women’s contraceptive decision making.
The experience of seeking reproductive care, especially counseling around birth control options, represents a point in women’s lives when we can be empowered to make health care decisions that are right for us. But with the growing number of options available and the consideration of side effects, diverse lifestyles, and values, women can also feel conflicted about their decisions which can be emotionally taxing and isolating. And with limited time to learn about our options, it is difficult to receive comprehensive counseling, discuss our concerns about specific methods, and identify our reproductive goals. Understanding how our preferences relate to our options is challenging while navigating the pressure to choose a provider-recommended option. These issues and perspectives are often missing in research without the patient voice.
The Impact Of Patient Engagement
During the first two years as a member of the project’s patient focus group I assisted with the redesign of the decision support tool and discussed how to effectively integrate the tool into the clinic setting. During several meetings we worked directly with the tool, reading through each page and testing its user friendliness.
We gave feedback on the user interface and aesthetic of the tool, and suggested changes that made the tool feel more relatable. For example, we suggested using a cartoon of naked women to show where IUDs are implanted because it felt more realistic and less awkward than a clothed cartoon even though the doctors and designers preferred the latter. We evaluated the language used and noted information that was confusing to us. The principal investigator and her research team worked closely with our group and ensured that our feedback would be incorporated into the next renditions of the tool. After many edits and months of interacting with the tool, it was piloted at the Women’s Community Clinic.
If this was going to be a tool used by women like us then it was important for it to be a tool that was designed by us.
In June 2014 I joined the research team as a patient stakeholder where I serve as a patient advocate and provide feedback on patient concerns throughout the study. During weekly research team meetings I share my patient expertise, which is incorporated into the purpose and design of the study. When I assist with patient enrollment and follow-up I am able to relate to participants because I am member of their patient community, which then allows me to address any concerns patients may feel about research participation.
I am the voice of underserved women that utilize safety-net clinics in San Francisco. Participating in research as a collaborator instead of a participant breaks down barriers to understanding complicated aspects of research including methodology, data analyses, and results. Being a patient partner has built my confidence and investment in changing health care as a valuable contributor. I became invested in the future dissemination of this contraceptive decision making tool, and am excited about its potential to change how we, as patients, choose birth control methods.
It became our tool.