Community Driven Innovation Delivers Participant-Led Research


In Duchenne muscular dystrophy research, the six-minute walk test is considered the standard endpoint to determine if a treatment would be successful. Because walking abnormalities are prominent in patients, researchers measure how far a patient can walk in six minutes to determine if a drug holds promise.

Ian Terry
Ian Terry, senior user experience researcher

When the COVID-19 pandemic occurred, most children and their families could not travel to research facilities for these six-minute walk tests. Instead, researchers began conducting phone interviews to continue their research and grant funding. They learned that, although specific treatments may not improve walk test distance, individuals were sharing stories of how their legs were getting stronger by walking their dog or standing up and playing catch—endpoints that had nothing to do with how far they walked. 

“It took the stress of a complete pandemic shutdown for researchers to begin asking the children and their families, what’s truly important to you?” says Ian Terry, senior user experience researcher at Luna. Terry was instrumental in developing a new methodology based on community-driven versus expert-led research—research driven by what individuals living with the condition determine as a priority. 

Community Driven Innovation™, or CDI, is a participant-led methodology that addresses long-standing problems with traditional research approaches while providing an unbiased, clear understanding of a community’s priorities, values, and challenges.

“Community Driven Innovation uses tools to align research around the needs and priorities of a patient group—or any health-focused community with a research question or problem to solve,” says Terry. “The complex science is built-in and “under the hood,” so to speak, making CDI accessible to anyone, no Ph.D. required.” 

Often, parents, caregivers, and family members don’t think in medical terms, but by using contextual interviews and other listening approaches, CDI was able to reveal families’ top concerns.

Ian Terry, Luna

CDI has been applied to research championed by patient advocacy groups, including KCNT1 Epilepsy Foundation, The Aicardi Goutières Syndrome Advocacy Association (AGSAA), and Bobby Jones Chiari & Syringomyelia Foundation. Luna has also utilized the methodology as the engagement foundation of the Veterans’ Health Priority and Women’s Health Priority communities.

Kaitlyn Esposito, MPH,  who leads programs and research for Bobby Jones Chiari & Syringomyelia Foundation, used CDI to determine their community’s readiness for FDA-approved treatments and clinical trials.  “We learned a lot of really interesting things, including just how complex the symptoms are in these conditions.  We knew it was complicated but were surprised at how complicated it truly was,” shared Esposito.

“Using CDI, the Aicardi Goutières Syndrome (AGS) community uncovered the importance of muscle tone management as a top priority,” Terry says.“ Often, parents, caregivers, and family members don’t think in medical terms, but by using contextual interviews and other listening approaches, CDI was able to reveal families’ top concerns.”

Historically, the clinicians or researchers would be the one who determines the research question. With CDI, the community can become research partners and advocate, in a data-driven way, for the real challenge or question they need answered.

In rare disease groups, researchers can quickly get funding to focus on a topic that may not already be supported. Those researchers often embark on a project with the most accessible endpoint to demonstrate results. However, that endpoint may not be what’s essential to that rare disease community, as shown with the walk test in the Duchenne muscular dystrophy community.

It’s easy to talk about participant-focused research. It is easy to speak about being patient-centric,” says Terry. “But CDI, for the first time in the health space, gives researchers a tool that marries true participant-focused research with patient engagement in a way that is both scientifically driven and a low burden to affected individuals, their families, and caregivers.”


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Ysabel Duron, Founder of the Latino Cancer Institute, Honors Her Heritage During National Hispanic Heritage Month


Growing up in Salinas, California, Ysabel Duron recalls her family was one of the few Mexican families in a small town of 30,000 people. There, she learned the importance of heritage and how culture shapes who we are as individuals. Today, Duron is an award-winning journalist, cancer survivor, and founder of The Latino Cancer Institute in San Jose, California. To help achieve those goals, LCI is working with Luna to host its community on the platform.

Ysabel Duron founded The Latino Cancer Institute after her own cancer diagnosis. The TLCI operates as a “science meets service” framework.

Duron was inspired to establish the organization after a diagnosis of Hodgkin’s lymphoma in 1999. Using her experience as a journalist, she documented her cancer journey in an effort to raise awareness about the disease.

The Institute is a national network of nonprofit cancer service agencies, dedicated to the promotion of education, research, and policy that diminishes the cancer burden in the Latino community. Because of her work, Duron has received the Living Legacy Award from the Chicana/Latina Foundation.

In honor of National Hispanic Heritage Month, Duron shared how her childhood in California and cancer journey inspired her to serve her community by advancing Latina cancer research, education, and advocacy.

Tell us about your work at The Latino Cancer Institute.

The Latino Cancer Institute (TLCI or The Institute) operates from a framework of “science meets service” and proposes to act as a connector, convener, and advocate for patients and stakeholders, who address health disparities throughout the cancer landscape. The goals of TLCI evolved from community-based work where we learn about gaps in services and barriers to care by engaging directly with and in the community, with cancer patients and their families. This direct work has informed much of the initiative, policy, and research in which we engage today.

Tell me about your childhood and how it shaped you as an adult.

I came from the lettuce capital of the world! In Monterey County, California, Salinas was a small town but mighty for its agricultural products. My first memories are those of my mom working in the canneries to cut peaches, broccoli, and other fruits and vegetables while my dad pulled ice for the refrigerated cars that delivered produce around the country.

Our other claim to fame was the Salinas Rodeo. Every July, my brother and sisters entered the Kiddie Caper Parade that marched down Main Street, so we could earn ourselves a ticket to the ensuing carnival and rodeo show. We were one of the few Mexican families. There were two Catholic schools and two Catholic churches, but only one Mexican church where the priest spoke Spanish. There was also one Mexican movie theater, so some of us would regularly accompany our parents, or we’d get dropped off at the English language movie house, where a ticket was a quarter, and a candy bar and popcorn were five cents.

As a high school kid, I was a good student, moving in and out of the various cliques, observing people. I can’t say I was a member of the cool kids clique, but I think my journalistic instincts were already at work, my imagination fed by all the books I read. It was those books at the library that nurtured my ideas of global travel, an interest in other worlds and peoples, a strong curiosity that drove me straight to journalism school out of high school and that continues to drive me in my advocacy work.

I actually don’t think one can separate heritage from one’s natural being; it is culture, values, and traditions. Heritage is a core part of who I am.

Ysabel Duron

Was there a particular person who inspired you growing up?

The concept of a mentor was not a widely known or discussed figure when I was growing up. I would say I had role models who, in bits and pieces, touched my life, but two women stick out.

My high school music teacher Mrs. Solazzi, who I always remembered for telling me, “in trying to hit high C, reach above it, and you’ll land on it.” That became a metaphor for setting high goals for myself, and for even defying my mother–a huge leap for a good Mexican, Catholic school girl–by telling her I alone had the right to decide if I could go to college because I was in charge of my life. And yet, it was my mother who showed me that adversity was not a problem, just a challenge.

My mother demonstrated her ability to overcome challenges when she and a small group of Mexican families came together to raise money and build a new Mexican Catholic Church in Salinas. Salinas was a small but important agricultural town in Monterey County. Through the early 60s, my mother led a small committee to host dances, tamale feeds, and menudo breakfasts after church to raise money.

In those days, there were hardly any big foundation grants available, but there was a large imported community of braceros–Mexican labor bused in from Mexico to toil the fields. My mom said, “braceros built that church,” because it was their attendance at the dances, their stops at the church kitchen for breakfast, and their support of the queen candidates of the Fiestas Patrias (Mexican Independence Day) that provided the resources. Ultimately, they raised over $250,000, a mighty sum in the early 60s! But that church stands today as a testimony to a people’s passion for faith, culture, and language. I never forgot that lesson watching my mom lead that campaign, leaving a legacy that means so much to so many churchgoers, who will never know its history or the people who made it possible. My mom demonstrated to me the power of one, who, with determination and passion can make a difference in the life of a community.

In celebration of National Hispanic Heritage Month, what aspects of your heritage do you think have impacted your work?

I actually don’t think one can separate heritage from one’s natural being; it is culture, values, and traditions. Heritage is a core part of who I am. Though born in the U.S. in small-town America, I was distinctly Mexican, not because of language, but because of all those parts of who I am. I often saw myself as other, apart from the mostly white kids I went to school with. Someone who stood on the sideline observing bound neither in one world or the other, but defined by my olive skin and my own strong heritage, reinforced by parent modeling, Catholic school training, and my own independent spirit. It is in fact that spirit, that independence, that curiosity underpinned by core Latino values of respect (respeto), spirituality, family (familia), and a belief in service to others, that guides my work.

I am a trained journalist. I have worked in TV news for 43 years. I fulfilled that dream but took on an encore career when I was diagnosed with Hodgkin’s lymphoma. My first remark to myself upon hearing the news was, “Ok God, this isn’t about dying. What’s the point?” And my second thought was, “I wonder if I should do a story?” So, I did. During treatment in the spring of 2000, I turned the camera on myself to show my TV audience a cancer journey, the Big C. This fear haunted many communities because, at that time, cancer was shrouded in a lack of awareness and only spoken about behind closed hospital doors or in whispers. Or in the Latino community, not at all. My mantra when I launched my first nonprofit in 2001 was “talking about cancer won’t kill us, the silence will.” And I made it my mission to break that silence, to spotlight the disease, and to help patients and families find support and answers.

It took me many years of public service, as my teams built upon what we learned, addressing gaps in services, collaborating to increase research knowledge about cancer impacts on Latinos, and working to remove systems barriers to quality diagnosis and treatment. It was throughout these 22 years of public service that I realized my heritage, that culture of familia, those values of respeto, and my own spiritually-driven desire to be of value, that inspired my work.

What has been a project you’ve worked on you’ve been especially proud of?

I’ve had the good fortune to collaborate with many Latina researchers over the years. In 2016, I partnered with Laura Fejerman, PhD, who was at UCSF at the time but currently is at UC Davis. I wanted to find a way to teach the Latino community about genetics, a critical growth area of research and medical discovery.

Dr. Fejerman and I decided to focus on hereditary breast cancer and develop a toolkit that provided training for community health workers to educate and raise awareness among low-income, low-literacy, Spanish-speaking, and immigrant women. Breast cancer is the leading cause of cancer incidence and death among Latinas in the U.S. who tend to be diagnosed at later stages and experience worse outcomes.

While disparities such as access, cost, and language barriers exacerbate the problem, just as concerning are the under-researched genetic factors that compound the issue. Lack of awareness and testing contribute to Latina breast cancer health disparities. In 2020, we were ready to launch an education piece when COVID hit. Community health workers were trained online utilizing a toolkit and Tu Historia Cuenta materials, which included a family history document for the participants. The program has resulted in the education of 1,062 women, identified more than 60 women at potential risk for BRCA genetic variants, and close to 500 women who were not up to date with screenings including mammograms, pap, and colorectal tests.

Our project is far from done until we change systems and drive policies that remove barriers to equity and quality care. For now, we are proving that Latinas, especially our most vulnerable population, are open to learning about more complex scientific issues. I am proud of what we have done so far, but I am working for the day that I can put this story to bed with a solution in sight.

What advice would you give young adults who are considering a STEM career?

As a patient advocate on the Board of the California Institute for Regenerative Medicine (the Stem Cell Agency), we are committed to promoting opportunities for youth from high school to graduate school and most particularly for racial and ethnic communities under-represented in the science field. I am proud that we are dedicated to opening doors for students to join prestigious labs through major research universities, academic institutions, and even community colleges to find opportunities in this cutting-edge field.

For young adults interested in STEM careers, start finding classes in your high school that introduce you to the genome and related research. Read! Identify internships and find mentors who can advise you on the best pathway for you to test your interest and find your passion. Don’t let naysayers or fearful parents blur your vision. You could be the one who discovers the cure for cancer, Parkinson’s, or Alzheimer’s, some of our most costly diseases that touch people we love, people we know, and people who could one day be you. Research is a hard journey but an inspiring one. Every step along the way is a learning curve that hopefully will add value to what you do, and will make you feel of value to the world.

What does Hispanic Heritage Month mean to you?

Latinos in this country, who number 62 million people, represent some 22 Latin countries. What most people don’t realize is that 63% are American-born and another 10% are naturalized citizens. The largest group, Mexican Americans, who are over 60% of this diaspora, can track some of their ancestral roots in the U.S. back 500 years, long before the Pilgrims landed at Plymouth Rock. During the Chicano movement of the 70s, some used to say, ‘we didn’t cross the border, the border crossed us!’ Hispanic Heritage Month gives Latinos a chance to tell their narrative which rarely shows up in the history book. It gives us an opportunity to set the record straight about our real story, which will take a lot longer than one month to explore and explain.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.