Build your confidence in your congenital heart care!
Join for expert and peer guidance, all in one place.
Drezden Plotkin, a pulmonary stenosis and ventricular septal defect patient, from Nashville, TN
Drezden Plotkin, a pulmonary stenosis and ventricular septal defect patient, from Nashville, TN
I am a CHD patient who had open heart surgery before my first birthday, so I know how difficult it is to obtain and maintain CHD-specific healthcare. EmpowerMyCH is a sophisticated tool that helps patients navigate the healthcare system and maintain continuous care. It has the potential to fundamentally improve the CHD patient's experience throughout their life.
Alison Gill, a Tetralogy of Fallot patient, from Michigan
Alison Gill, a Tetralogy of Fallot patient, from Michigan
As a woman of color, I wanted my demographics to be heard and accounted for. When I was diagnosed, back in the late 60's early 70's, with Tetralogy of Fallot, things were a lot different and actually became scary.
Since being involved with this wonderful group of trailblazers, I have learned a lot more about my condition that I wish I had known back in the day. I am here to help others learn now, what I wish I had the opportunity of knowing. Growth and education in any medical field are very important and I am just glad that I can be a part of it in any way.
Karla Deal, a Tetralogy of Fallot patient, from Florida
Karla Deal, a Tetralogy of Fallot patient, from Florida
As a CHD patient, I am happy to be part of EmpowerMyCH because this digital tool is a helpful resource that will support CHD patients in their healthcare journey. My hope for patients within EmpowerMyCH is that it will enable them to confidently navigate adult healthcare systems through its guidance, resources, and information. Empowering patients to engage in their care, which I feel contributes to a sense of thriving with CHD.
Katia Bravo, MD, ACHD cardiologist, from Jacksonville, Florida
Katia Bravo, MD, ACHD cardiologist, from Jacksonville, Florida
EmpowerMyCH arises as a potential tool to help bridge the equity gap in adult congenital heart disease care. In a world where access to high-quality medical care is variable, building tools that can increase access to patient education is important to support vulnerable populations
Jennifer Gilmartin, NP, ACHD Nurse Practitioner, from Kaiser Permanente Northern California
Jennifer Gilmartin, NP, ACHD Nurse Practitioner, from Kaiser Permanente Northern California
I have had the privilege to care for patients with congenital heart disease, and they have taught me so much. These patients make important decisions about their health and lifestyle which may be different from their peers. It’s important for us as providers to equip them with the information needed to navigate the medical system and to ensure they are making good choices. Knowledge is power. EmpowerMyCH allows patients to find reliable information that can improve their understanding of their congenital heart disease.
Made for You
Rooted in community
This is where EmpowerMyCH comes in - with a simple goal of supporting your individual health needs while connecting you with congenital heart patients/family members, providers, and advocates.
It's easy
- Create your personal medical passport
- Access tailored health information
- Connect with the congenital heart community
- Explore stories and advice from other patients
- And much more!
Disclaimer: EmpowerMyCH does not provide medical, legal, or financial advice. If you are looking for such advice, please seek help from the appropriate professionals.
Our Team
Study Team
Anushree (Anu) Agarwal, MD MAS
Principal Investigator, UCSF
Gregory Marcus, MD MAS
Co-Investigator, UCSF
Michelle Gurvitz, MD
Co-Investigator, Boston Children's Hospital, Harvard Medical School
Megumi Okumura, MD, MAS
Co-Investigator, UCSF
Karina Manayan, NP
Co-Investigator, UCSF
Aleah Sparks, RN, MSN, CPNP-PC
Patient Co-Investigator
Joe Valente, BCPA (Board Certified Patient Advocate)
Patient Co-Investigator, Team Uncle Joe
Karina Buenrostro, BA
Clinical Research Coordinator
Rong Duan, MS
Statistical Analyst
Parang Kim, MA
Protocol Project Manager
Student Researchers
Katelyn Macholl, BS
Juhi Meta, BS
Kevin Sun, BS
Pranav Ahuja, BS
Alice Qian, BS
Heart Research Alliance
Madelaine Faulkner Modrow, MPH
Director of Heart Research Alliance
Consultant
Professor Philip Moons
University of Leuven, Belgium
Advisors
Jennifer Gilmartin, NP
ACHD Nurse Practitioner
Alison Gill
Patient
Carissa Ostrom
Family Member, Conquering CHD
Mandy Sandkuhler
The Mended Hearts, Inc.
Kimberly Payton, PhD
Family Member
Savannah Regan-Hendrix, MSCP
Patient
Karla Deal
Patient, Adult Congenital Heart Association
Drezden Plotkin
Patient, Adult Congenital Heart Association
Dorothy Li
Patient
Jodi Smith
Family Member, Patient & Family Advocacy Leader
Leigh Reardon, MD
Pediatric and ACHD Cardiologist, University of California Los Angeles
Katia Bravo-Jaimes, MD
ACHD Cardiologist, Mayo Clinic, Jacksonville, FL
Mark D Norris, MD, MS
Pediatric and ACHD Cardiologist, University of Michigan
Benjamin H Meisel, MD
Medical Director, California Children’s Services San Francisco, Maternal Child Adolescent Health Department within SF Dept of Public Health
Carol Maguire, RN
A Founder of Eureka
We remember Carol, who was a selfless and passionate champion for engaging patients and the community in congenital heart research.
Participating Organizations
Adult Congenital Heart Association
Conquering CHD
Mended Little Hearts
Team Uncle Joe
Acknowledgments
Samantha Tolosa, ACHD Patient
Margaret (Peggy) Powers, ACHD Program Coordinator, UCSF
FAQs
How do I sign up?
It's easy! You sign up with your name, email, birth date, and create a password. After you learn about the study, you'll be asked to sign an electronic consent agreeing to participate and you will then become a member of the EmpowerMyCH Community!
Why do I have to sign a consent form?
EmpowerMyCH prides itself on the steps we have taken to protect your personal information. The consent form outlines the study activities and your rights as a participant in this study. Your participation in this study is voluntary and you can withdraw at any time.
What will I be asked to do?
You will be asked to answer health-related questions and check in regularly so we can connect you with the congenital heart information and community.
You will also have the option to connect your electronic medical records and wearable devices.
You can be a part of this congenital heart community for as long as you wish and you can withdraw at any time.
What happens if I say “Yes”, but I change my mind later?
You can leave the study at any time; it will not be held against you. Choosing not to be in this study or to stop being in this study will not result in any penalty to you or loss of benefit to which you are entitled. Specifically, your choice not to be in this study will not negatively affect your right to any present or future medical treatment.
What device/s do I need to participate?
You can join the study using your smartphone or computer. Once you create an account, you can use either device to be a part of EmpowerMyCH. On the smartphone, you will have access to the ‘Medical Passport’ feature of the app. On the webpage, you can find some more information about the study and resources so we encourage you to also visit the webpage from time to time.
Will I be paid?
No, you will not be paid for taking part in this study.
Is my data safe?
Absolutely. We take this very seriously and pride ourselves in the steps we have taken to protect your information and keep it private and secure. Read the Privacy Policy here.
Are there benefits to participating?
You may or may not benefit directly from participating in this study. For example, some of the information we hope to share with you could help you feel more in charge of your health and connected to your community. At the least, you will be contributing to the efforts in helping clinicians understand ways to improve the health and well-being of people like you who are living with a congenital heart condition.
Is there a risk to participating?
As with any mode of electronic participation, there is always a small risk of loss of privacy. However, we do our best to protect your study information. See our Privacy and Data Security Policy for more information.
Who can I contact if I have questions?
If you have questions about the study, please email our team at EmpowerMyCH@eurekaplatform.org.