A New Kind of Scientific Partnership
As children, many of us were asked what we wanted to be when we grew up. Some dreamed of becoming police officers, doctors, or scientists. In our minds, scientists were people in lab coats working together to solve problems that once seemed impossible -like discovering cures for disease.
What many of us never imagined was that the people most affected by those diseases would one day play an active role in the scientific process itself.
Today, that idea is becoming reality.
At HeartWorks, scientists and the congenital heart defect (CHD) community are working together through The Co-op @ HeartWorks – a patient-powered research platform designed to advance understanding of CHD and accelerate progress toward better care and therapies.
Why Lived Experience Matters in Research
For generations, research largely happened inside labs and hospitals. Scientists collected data, analyzed it, and shared their findings with the world.
But one critical source of knowledge was often missing: the lived experiences of patients and families.
HeartWorks recognizes that researchers do not have all the answers. People living with congenital heart defects experience the condition every day – and their insights are essential to understanding how CHD truly impacts life, health, and long-term outcomes.
The Co-op was created to bring these perspectives into the research process.
What Is The Co-op @ HeartWorks?
The Co-op @ HeartWorks serves as an ecosystem where the CHD community and researchers contribute to a shared understanding of congenital heart disease.
Through this collaborative platform, people with CHD can help shape research that may ultimately benefit the entire community.
Who Can Join?
Membership in The Co-op is open to:
- Individuals diagnosed with congenital heart disease
- Legal guardians of individuals with CHD
- Legal representatives of individuals with CHD who are no longer living
Each member contributes valuable insights that help expand the collective knowledge about CHD.
How Patient Experiences Become Scientific Data
The Co-op operates as a power-patient system, meaning community members help drive research by sharing their experiences.
Members may contribute information in several ways:
- Answering surveys about health and life experiences
- Optional daily symptom tracking
- Optional electronic medical record (EMR) integration
All responses are transformed into scientific data that researchers can analyze to identify trends, needs, and opportunities for new studies.
Members can also compare their experiences with others in the community anonymously, helping them better understand how their own journey relates to others living with CHD.
Turning Data Into Research and Clinical Trials
The information shared within The Co-op helps identify some of the most pressing needs in the CHD community.
This data may help researchers:
- Identify patterns in symptoms and long-term outcomes
- Develop new research questions
- Design clinical trials focused on community needs
- Recommend relevant research opportunities to individual members
Researchers at HeartWorks design surveys that explore topics such as:
- Medical history
- Mental health
- Quality of life
- Long-term health outcomes
When combined with medical record analysis, these insights can generate findings that are shared back with the community in the form of educational resources, research updates, and opportunities to participate in studies.
A Growing Community of Contributors
Today, more than 300 members of the CHD community actively participate in The Co-op by contributing information through surveys and shared experiences.
Each new member strengthens the collective understanding of congenital heart disease.
Patient-powered research is exciting because it goes beyond technology alone. It depends on trust, collaboration, and ongoing involvement from the community it is designed to serve.
The Role of Medical Records in Advancing Research
One important part of The Co-op’s future is the meaningful integration of electronic medical records.
For members who choose to connect their EMRs, these records may provide researchers with a more complete picture of each person’s health journey. When combined with survey responses and lived experiences, this information can help identify patterns related to:
- Health complications
- Treatments and interventions
- Long-term outcomes
However, participation – including sharing medical records – is always completely voluntary. Members can choose the level of information they feel comfortable contributing.
Why Participation Matters
The power of The Co-op depends on participation.
Without enough people contributing information, researchers may not be able to fully uncover the insights that could lead to new discoveries, better care strategies, and future clinical trials.
Every shared experience adds another piece to the puzzle of understanding congenital heart disease.
The Future of Patient-Powered Research
The future of research will not come from hospitals or scientists alone.
Real progress happens when patients, families, doctors, and researchers work together toward the same mission.
That is the vision behind The Co-op @ HeartWorks.
The next step will focus on strengthening these connections and expanding participation across the CHD community – building a future where patients are not just part of the story of research, but partners in discovery.
Join the Co-op @ HeartWorks
If you or someone in your family was born with congenital heart disease, your experiences can help advance research.
By joining The Co-op @ HeartWorks, you can contribute valuable insights that may help researchers better understand CHD and develop future therapies.
Participation is voluntary, and you choose what information you share.
Join the Co-op and help shape the future of CHD research.
