Community Inquiry with PERLA Health
Roles: User Researcher and Project Manager
PERLA Health’s evidence-based, integrative approach is changing the way PCOS education and care are delivered. They empower women on their journey to better health and well-being through access to reliable information and a supportive community of experts and fellow patients.
Key methods: competitive assessment, user interviews, and archetype development.
Details
7 Weeks in Autumn 2020
Advised by Janine Kopp and Katherine Folkendt, PERLA Health Co-Founders
From meeting with the PERLA team, I developed a research plan to address the needs and reach a deliverable read-out.
During the MHCI+D course on User Research, students experienced in the user experience research field were given the opportunity to explore projects outside of class deliverables, I connected with PERLA Health and their co-founders Janine Kopp and Kathrin Folkendt. PERLA Health is an educational and planning resource available to women with polycystic ovarian syndrome (PCOS) with a membership subscription.
Working with PERLA.
Selecting to explore an industry I did not have prior experience in, provided a unique opportunity to gain sector breadth.
Developed Research Plan
Through several interviews and co-design sessions with the founders, I was able to define the research space of community building to a series of research goals:
Study Goals:
Define what can make a successful, small online community based upon shared medical experiences.
Understand the PCOS community; who should be involved, how they should be involved, and what needs to be done to feel supported.
Create a potential blueprint for an onboarding experience that aligns with the mission of an inclusive and accessible community.
We developed a series of primary research questions that I would be striving to answer through this study.
Research Questions:
What are the expectations for PCOS community engagement via a network platform?
How can members feel respected and supported?
What is the goal amount of engagement to maintain the relationship without overwhelming them?
What entices someone to join an online community around a health issue?
How have past communities interacted with members?
How can PERLA Health be an influence and leader in the PCOS community as we launch the growing community platform?
Taking these goals in hand, I moved forward to recruit utilizing word of mouth, professional connections, and social media. I interviewed 6+ participants from the key stakeholder groups that helped drive the findings and study results.
Health is everything.
Hearing about a variety of first-hand experiences with the process of diagnosis, treatment, and living with of PCOS provided valuable understanding of the pains in the journey.
Analyzed Findings
Based on the PERLA team’s information needs, I analyzed the data I gathered into actionable insights and recommendations. Here are a few actions and top takeaways from each section, please find more in-depth results in the final deck at bottom of the page.
Analyzed current PCOS online community and compared with best practices of online community building.
Insights
New members are overwhelmed by drastically different experiences and problems based on the current life stage the prominent members are in.
Recommendations
Develop guidelines for which topic groups and sub-communities to join based upon a short quiz that defines goals and needs
Provide example questions, suggested language, or ‘looking for x feedback.
Through research conducted in interviewing members from each of the three stakeholder groups to determine actionable recommendations in forming a community.
Insights
The best way of establishing trust in health information is through carefully considered recommendations and resources.
Healthcare and medical professionals’ input is highly desirable to any community.
Recommendations
Working with mental health advocates to encourage beneficial mental health practices as well as physical concentration.
Bringing healthcare professionals in to provide directed advise or supervision would highly entice participants to join a community
Defined blueprint for on-boarding of members into a PCOS online community.
Insights
Within large communities, it is challenging to find more intimate, relatable groups to take advice from.
While there are lots of resources, it's critical to showcase where resources are available and how to access them early and often.
Recommendations
Ability to create groups within a community defined by life stage, location, or PCOS goals (e.g. fertility, periods, weight).
Partnerships with advocacy organizations and show clear channels to resources and how to find answers to questions.
Determining the Roadmap.
As an early-stage venture, this research played a major role in defining upcoming product development decisions.
Synthesized Strategy
Through weekly meetings with the PERLA team and conducting independent asynchronous research, I provided a series of recommendations on strategic decisions for upcoming projects.
Prioritized recommendations:
Develop a tool that holistically shows where and how PCOS can affect different parts of the body and mind.
Continue establishing a presence as a resource.
Generate materials and partnerships with known PCOS doctors and facilities.
Identify doctors that would be interested in becoming community cohort advisors.
For community-building, review models (e.g. Spotify culture model) that can provide the architecture for groups and ‘squads’ based upon life stage, location, or PCOS goals.
From these recommendations, the leaders of PERLA Health have chosen not to pursue a community feature and dive further into product development for a tool that helps people with PCOS gain a more holistic understanding of its effects on their bodies.
Entrepreneurship.
As my experiences with early-stage ventures and start-ups continue, my interest in product development and new ideas grow.
Reflection
My experience with PERLA allowed me to improve my methods along with gaining experience in the non-profit and medical sectors. Having little experience in the healthcare sector, working to research vulnerable populations, such as people with polycystic ovarian syndrome, gave me experience and provided valuable lessons in methods and perspectives for this type of work. From working with a small start-up I was able to understand more about ownership and independently operating while learning when to bring in guidance.
A key reason I was excited to work with the co-founders in the first place was to learn directly from them about their experiences as female founders navigating fundraising and product roadmap decisions. This was a very formative experience that helped me understand more about capital acquisition, disruption, and the drive it takes to start a business.