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If you’ve ever had a family member or loved one suffer a serious or catastrophic illness, you know the overwhelming sense of helplessness… that tight knot in your gut each time there is a crisis.
For millions of Americans who suffer from a chronic condition, having instant access to their medical information when they need it is critical – it can even be a matter of life and death.
When my son Alex was 7, he was diagnosed with a brain lesion that resulted in hydrocephalus. Over the years, Alex has had nearly 20 brain surgeries and hospitalizations. Today, just by looking at Alex, you would not know that he has two shunts implanted in his brain that drain off cerebral spinal fluid. If these shunts should block or break Alex could go into a coma, suffer brain damage or even die. He also has allergic reactions to several antibiotics.
For years I was the keeper of Alex’s medical information, storing his records and scans in boxes and keeping them ready in the trunk of my car. I soon learned it was my task to coordinate his care, making sure that each of his doctors had all the information from the several other doctors treating him. At one point, Alex was under the care of five different specialists in different locations. Since then, some of his doctors have retired, while others have moved to other locations, leaving his records behind.
For years, I constantly lived with the fear that Alex might have a medical emergency and I wouldn’t be there to help him. That fear hit home in 1999 when Alex landed in an emergency room in a small rural hospital out of state.
When I got that late night call, I spent a long time trying to explain Alex’s complex condition, his allergies, his shunts and recent medical treatment. I was terrified that they would do something that would cause harm to Alex or make things worse. Lucky for us, the situation turned out ok.
The FollowMe PHR was born out of desperation to keep my son safe. We developed a personal health record that could be accessed anytime by Alex, his family, his doctors or emergency teams. It only made sense.
Everyone should have access to their important health information 24/7.
We are told everyday that medical errors may kill or maim us or our loved ones. And, that access to accurate and timely information is the key to eliminating many of those errors.
2010 marks the 10th anniversary of FollowMe. While our commitment to our members and health consumers everywhere has not waivered our mission has expanded.
Today, the idea of allowing consumers to have access to their medical information and to transmit and receive information electronically from their PHR to their physicians and hospitals is becoming an “expectation” of consumers. And we at FollowMe are working hard at the technical and policy level to keep the “consumer” as the focus in accessing and exchanging health information. Several of our products now link providers and patients with a shared network while others have very rigorous permission and consent tools.
This is my vision as we move to a new decade – consumers accessing their own health information from multiple sources, including doctors’ offices, hospitals and health systems and easily managing that information at their fingertips, with the ability for them to share that information electronically with high-level security assured by appropriate consumer-controlled permissions and consents.
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