The LIVESTRONG Foundation’s staff member Naveen Rao recently had an opportunity to speak with Carrie Handley. Carrie is a health care professional-turned health IT consultant, now turned cancer warrior. Carrie’s story is making small waves in health IT circles around the web: After a nearly missed breast cancer diagnosis, Carrie grew frustrated with the mistakes, the poor coordination, and the lack of information available to her in her health care system. With the help of her family, she took matters into her own hands-literally- tracking down all of her medical information and putting into an iPad. In this blog post, Carrie shares her story, her thoughts on health information technology, and some simple words of encouragement to the thousands of patients facing a diagnosis.
“How can I avoid falling through the cracks again?”
Here Carrie shares her story of getting diagnosed with breast cancer in 2010.
In the spring of 2010, I had a biopsy done after my annual mammogram showed some suspicious findings. When the biopsy results were finally given to me – I was told it was negative. Several weeks later however, the hospital that performed the biopsy soon called me back asking why I hadn’t come to my follow-up appointment as my biopsy was positive. You could imagine my confusion – and anger. But, that was how I found out about my cancer diagnosis: a misplaced and misread biopsy report.
This began the frustration with healthcare – particularly because I’m in the healthcare industry! This experience made me start to ask myself, “How can I make this easier? How can I avoid falling through the cracks again?” As I went into the mastectomy process, I started to collect all my records, the old school way. I got hold of any previous mammograms, biopsies, lab reports, etc. Sometimes this information came on a CD, an X-ray film, and sometimes just on plain old paper. I kept feeling like I was being punked! Because I was being seen at a number of care facilities, I made the point of going to the medical records department to collect my files. It was well worth the effort. It got me informed about me and it got me informed about my diagnosis.
“It took a bit of elbow grease, but it can be done”
How did you turn to technology to support your treatment journey? Did you look at what tools are out there for patients?
I was carrying all this medical information around in a heavy binder. After a few months, my husband suggested putting all this clinical information on our laptops to make it easier. However, we quickly realized that even this approach was outdated when my son walked into the room one day with his iPad. So, I just copied all the medical records folders from my laptop to my son’s iPad. We started using that technology and haven’t looked back.
It really turned out to be a great way to communicate with my surgeons and physicians. It took a bit of elbow grease to get all my medical records, upload and arrange them in folders but it can be done!
Mobile medical records app are available on the apps store and are an option but I found the folder methodology worked just as well. I found you don’t need to be a techie to put together your own digital medical record.
“Don’t Be Afraid.”
We asked Carrie what advice she would give other newly diagnosed patients, or what she would do differently if she could go back to that first day of diagnosis.
This is the number one question I am asked and I answer it by saying two things: start by understanding your body and get all your medical records from day one. By understanding your body and what it is telling you every day – through how you feel or look – you will become more informed and make better choices about your lifestyle; whether it be choices about food, or exercise or relationships. I listen to my body as a religion now, but it certainly is something I wished I had done before my diagnosis.
The other important thing is simply getting your medical records. When your medical record is stored in a physician’s office or a hospital records department, you don’t have access to the details about your condition. Don’t be afraid to gather up, to question, to understand what all those tests and reports mean. In retrospect, I would have started gathering all my medical data well before my diagnosis. It was only after I got my medical information that I was able to know what was happening to me. It allowed me to converse on an equal footing with my physicians. You can work with your physician – I am sure he/she will appreciate the effort you put into your own healthcare.
Sharing my story feels like a small step in helping others, but I’m hoping it will make a difference. I still do believe that I have had good care throughout the years – but now that I am fully involved in my own health record – I have great care!
We applaud Carrie for her bravery, her determination, and her support of the cancer community. We encourage you to follow her journey on Twitter, Facebook and her blog. For more information about LIVESTRONG’s health IT tools available to patients, including the Cancer Guide + Tracker App, or our online Survivorship Care Plan, please contact Health IT Manager Naveen Rao.