Giving Patients Access to Prior Mammograms: For Me, It’s Personal

I never imagined that I would be a radiologist advocating for patients in the healthcare tech world. The life pursuit of throwing open access to prior mammograms for women wasn’t on my career to-do list when I consulted my high school guidance counselor to narrow my college choices.

In due time, however, the career found me. Here’s my story.

I grew up in Northern California, in an area where breast cancer risk is doubled simply by virtue of being born there. Breast cancer had a strong history in my family. My great-grandmother died of it. In those days they didn’t screen. By the time they found her breast cancer, it was metastatic to the brain.

My grandmother had a mastectomy in her 40s. Her twin daughters had breast cancer, one in her 40s and the other developing three pathologically distinct breast cancers. Another aunt was diagnosed when she was 38 and passed away leaving two-year-old twins. My mom had breast cancer.

Breast cancer ravaged my family emotionally, starting with my grandmother, who was psychologically crippled from her surgery, which in those days was deforming. My aunts were terrified and anxious. By the time I came along, it was painfully obvious there was a genetic predisposition toward breast cancer in my family, and I wouldn’t be far behind.

Breast cancer found me, too

While I was in early medical training at the University of California, San Francisco in my mid-20s, I went through genetic counseling for breast cancer. A counselor looked at my family history and determined I had an 85 percent lifetime risk of developing breast cancer. They advised me not to get tested for the gene since, by law in California, that would assign me a pre-existing condition that would preclude me from qualifying for health insurance.

I followed their advice and did not get tested. What I did, however, was learn everything I possibly could about breast cancer. I became a radiologist, followed by a fellowship in breast imaging with Ed Sickles, MD, one of the fathers of mammography. I monitored myself, starting screening mammography at age 30.

During those years, I practiced high-volume breast imaging in San Francisco and Jacksonville, Florida, for 15 years. Every time I diagnosed a patient’s breast cancer, I thought, “This could be me … this will be me.”

Finally in my mid-40s, it was me. The signs of early bilateral breast cancer appeared on my own MRI screening: 6 cm of abnormal ductal enhancement in one breast and an entire lower inner quadrant in the other. A negative biopsy would not have reassured me, and the uncertain future of my extremely dense breast tissue was a ticking time bomb. The decision was easy. I don’t mind surgery. I do mind chemotherapy.

Without hesitation, I underwent a nipple-sparing bilateral mastectomy, which was unusual at the time – before Angelina Jolie’s raising awareness of the decision process that some women choose for preventive medicine.

That whole experience gave me a wake-up call. I was burning myself out practicing radiology 10 hours a day during the week and three to four weekend days a month. I stopped practicing.

Fixing mammography, one scan at a time

While I had stopped seeing patients, I still had a strong interest in helping women and I certainly knew a lot about medicine and breast cancer in general. It was clear to me this was an area in which we could improve medicine. Research shows that, with increased availability of prior exams, the quality of patient care and outcomes are improved. Breast cancer can be detected earlier, therefore resulting in less-traumatic and less-costly treatments.

In a study at UCSF, the risk of unnecessary additional examinations is increased 260 percent when prior mammograms are not available for comparison. These high recall rates account for the majority of imaging costs related to breast cancer screening.

Because breast tissue is unique to each individual, archived images provide a benchmark for evaluating changes in tissue composition and assist in the early detection of cancer. When there is a perceived abnormality, the patient is called back for additional imaging of a screening finding. In a grand majority of the time, it is not cancer, and therefore a false-positive result is discovered. This average callback rate for mammography screening in the United States is approximately 10 percent, according to peer-reviewed studies that have examined the data.

Yet it is technically difficult to keep patients connected to their prior mammograms. Patients move between locales, health systems, or both. Some hospitals willingly share mammograms with patients. Others are hesitant, for fear of losing them.

I found the lack of accessibility to priors a barrier for patients and launched Mammosphere to help solve this problem. The concept is a mammogram-sharing cloud that provides hospitals, imaging centers, and patients with electronic access to prior mammograms. It is most active in the Jacksonville, Florida where Mammosphere was formed. Now we’ve joined forces with LifeImage, and in the coming months, the reach of the network will open mammogram access to millions more women.

For patients, the health IT interoperability argument is real

Among the bits, bytes, and bottom lines of technological and financial considerations involved with health IT initiatives, we must never lose sight of the patients and their stories. They need to be at the center of all technology initiatives to improve care.

Physicians who are informaticists can lead the way in accomplishing care improvements. They comprehend not only the technology, but its usefulness in care paths, as well as the specific clinical justifications for using technology to overcome challenges that today create financial waste as well as angst, inconvenience, and sometimes pain for patients.

While it would have been impossible for me to foresee this career path, I now find myself in the health IT realm as a patient advocate. Like many others, I’m hoping to positively influence care quality while helping reduce costs for patients, providers, and payers. By using technology as the tool to achieve it, I believe it’s possible, and that breakthroughs on a national scale are right around the corner.

The top federal health IT leaders came to HIMSS16 pushing health data interoperability. It might sound geeky, but it’s not. It is foundational to helping 60 million women who undergo regular mammograms in the United States, 39 million of whom screen annually. They need access to prior mammograms in a central cloud repository, and they need to maintain freedom of choice to see healthcare practitioners best suited to their needs and personal circumstances.

How do I know all of this is true? Because I am that person. A radiologist who sees the potential power of health IT to fix broken care paths and take on breast cancer – which found me through my family tree. I will not rest until we stop this disease.

 

This post was originally published on histalk2.com

 

Kathryn Pearson Peyton

 

by Kathryn Pearson Peyton
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www.mammosphere.com