How The Co-op @ HeartWorks Helps Families Stay Connected to Their Care
For many families, vacations and travel are some of the most meaningful parts of life. Time away offers a chance to explore, recharge, and create memories together.
For families living with congenital heart disease (CHD), travel can also come with an added layer of planning.
Questions often arise:
- Do we have everything we need if something unexpected happens?
- Will a new care team understand our child’s history?
- How quickly can we access medical records if needed?
Having answers to these questions can make all the difference. For heart families, peace of mind often comes from preparation.
Why Having Medical Information Matters
In a medical emergency, healthcare providers will always act quickly to provide care. However, having access to a patient’s full medical history can help ensure that care is as informed and personalized as possible.
Congenital heart disease is complex. Each patient’s anatomy, procedures, and care plan are unique. Having key information readily available – such as surgical history, medications, and care notes – can help providers make more informed decisions, especially when care is needed away from home.
While laws like HIPAA protect patient privacy and ensure that only authorized individuals can access medical records, accessing and transferring those records between health systems can take time. In some cases, records may take up to 30 days to be provided and may involve additional steps or fees.
In moments where time matters, having information readily accessible can provide reassurance and clarity.
Built with Heart Families in Mind
At HeartWorks, we recognize that families living with CHD navigate more than just clinical care – they manage a lifetime of information, decisions, and preparation.
When The Co-op @ HeartWorks was created, it was designed to be more than a platform. It was built as a supportive, patient-centered resource that reflects the real needs of the CHD community.
Rather than placing the burden on families to organize everything on their own, The Co-op brings key tools and information into one connected space.
What Is The Co-op @ HeartWorks?
The Co-op is a patient-powered initiative designed to help individuals and families living with CHD stay organized, informed, and connected.
It offers tools that support both day-to-day care and long-term understanding of health.
Through The Co-op, members can:
- Track their health journey through surveys and journaling
- Bring medical information together through record sharing and integration
- Prepare for doctor visits by tracking symptoms and questions over time
- Learn from shared experiences through anonymous benchmarking within the community
This combination of tools allows families to move from reacting to care…to feeling more prepared and informed at every step.
A Tool for Everyday Life and the Unexpected
Whether preparing for a routine cardiology appointment or planning a family trip, having information in one place can make a meaningful difference.
Members can:
- Keep notes for upcoming appointments
- Monitor changes in symptoms over time
- Securely access and share medical records when needed
These small actions can help create a greater sense of confidence – not just in clinical settings, but in everyday life.
Supporting Families, Advancing the Future
The Co-op is not only a tool for individuals – it is part of a larger effort to strengthen the future of CHD care.
By choosing to share their experiences and insights, members are helping build a resource that can:
- Improve understanding of congenital heart disease
- Inform future research
- Support more connected and informed care
- Alert members if trials are available for them
Every entry, every shared experience, and every data point contributes to a broader picture of what it means to live with CHD.
Here to Help You Get Started
For those interested in joining or learning more, support is always available.
Emma Hofmeister, a member of the HeartWorks team, is available to guide families through The Co-op and help them explore its features step by step.
The Co-op is open to:
- Individuals living with congenital heart disease
- Legal guardians of someone with CHD
- Legal representatives of someone who has passed away from CHD
Whether you are just getting started or looking to better understand how to use the platform, support is available every step of the way.
Moving Forward, Together
Living with congenital heart disease requires strength, organization, and ongoing care. Tools like The Co-op @ HeartWorks are designed to support families not just in moments of need – but in everyday life.
Because when families feel prepared, connected, and informed, they are better equipped to navigate whatever comes next.
And together, those shared experiences are helping build a future where care is more connected, more informed, and more personalized for every heart.
Take the Next Step: Join The Co-op @ HeartWorks
Living with congenital heart disease means managing more than appointments – it means navigating a lifetime of information, decisions, and unknowns.
The Co-op @ HeartWorks was built to help make that journey more connected, more organized, and more informed.
Create your free account today and:
- Keep your medical information in one secure place
- Track symptoms and prepare for appointments with confidence
- Learn from others in the CHD community
- Contribute to research that could shape the future of care
- Be alerted if you become eligible for a clinical trial
Every experience shared helps move the field forward.
If you’d like help getting started, Emma is here to guide you step by step and answer any questions along the way.
FAQs
Why should CHD families keep medical records organized?
Because congenital heart disease is complex, having access to medical history helps ensure more informed care – especially during emergencies or when traveling.
Can I access my medical records anytime?
Access may vary by provider, and records can take time to transfer. Tools like The Co-op help bring information into one place for easier access.
What is The Co-op @ HeartWorks?
The Co-op is a patient-powered platform where individuals with CHD can track their health, organize medical records, and contribute to research.
