Mended Hearts: supporting the patient journey

Dec 6, 2018
Mended Hearts: supporting the patient journey

Across all the stages of the patient journey, diagnosis is the point at which people with heart disease most need help and support.

But it’s during this time that they are least likely to reach out to advocacy groups like Mended Hearts. That’s according to Andrea Baer, Director of Patient Advocacy and Program Manager at the charity, which supports people with all forms of heart disease, their families and caregivers.

“Diagnosis is the most critical point of anyone’s heart journey. People truly need support, but they don’t automatically reach out,” she said.

“It’s like a trauma period: you go into survival mode. You are not looking to find help, you are just listening to what the doctor says, doing what they tell you to do and going where they want you to go.”

Speaking about receiving her new-born son’s congenital heart defect (CHD) diagnosis, Andrea said she knew all too well what that was like.

Despite this challenge, Mended Hearts does everything they can to make sure people have the information they need – at whatever stage they are ready to ask for it.

Work spans from raising awareness of symptoms and conditions, through diagnosis and treatment, to helping people adjust to living with a heart condition long-term.

Programs include a peer-to-peer heart patient support network of 300 chapters which serves more than 460 hospitals across the United States. While the Mended Little Hearts program offers support specifically for families of children affected by CHD.

“Understanding that emotional place is really important. Peer supporters can say ‘I have done it, you can do it too’,” said Andrea, adding that peer support was pivotal at every step of the patient journey.

Below we illustrate the journey a heart patient may follow, the potential impact and how Mended Hearts are able to help. Of course, everyone’s journey is different and people will have their own experiences. To find out more about Mended Hearts, please click here.

Mended Hearts

Mended Hearts: supporting the patient journey

Author

Andrea Baer, MS – Director of Patient Advocacy and Program Management, Mended Hearts

Andrea Baer is Mended Hearts/Mended Little Hearts Director of Patient Advocacy and Program Management, where she oversees the development of the Patient Advocacy Network and Educational Programs. Andrea represents the organization on a variety of collaborations and coalitions, as well as focusing on public policy that directly affects cardiovascular patients on a state and federal level. Prior to her current role, she was an accomplished volunteer who has given thousands of hours of service to Mended Hearts (as a member of the Executive Committee and Board) over the past eight years. As the founder of MLH of Southwestern, PA, she led the group to win the MLH Group Excellence award in 2011.

Andrea has been deeply involved in advocacy efforts with the March of Dimes and Mended Little Hearts and has built a strong relationship with Congressional and industry Leaders. She is a member of the CHPHC (Congenital Heart Public Health Consortium) Policy Committee, a peer reviewer for the Department of Defense’s Congressional Directed Medical Research Program, and was recently published in the Journal of Managed Care, with Colleague Marcia Baker, on improving medication and treatment adherence through peer-to-peer support.

Andrea graduated summa cum laude from Walden University and was a recipient of the President’s Medallion. She was awarded the Walden University Scholar of Change award in 2013 for her outstanding achievement in social change.

 

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