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Transition to EHRs Improves Breast Cancer Survivor’s Quality of Life: Pam Crum’s Story

Posted Oct 07 2011 12:55pm
Pam Crum is a seven-year breast cancer survivor. A busy mother of two young daughters, Pam also volunteers as a mentor for women who have been diagnosed with breast cancer.

When Pam’s cancer was diagnosed, she was pregnant with her second child. Her medical journey over these seven years has been a complicated one. During that journey, her health care providers were making the transition from paper-based to electronic health records. Pam experienced the transition first-hand, and knows what a big difference it can make.

ONC talked with Pam about her experiences.

ONC Would you mind sharing a little about your illness?

CRUM Well, when I was 22 weeks pregnant, I was diagnosed with stage 3B breast cancer, inflammatory breast cancer. They did chemotherapy while I was pregnant. I gave birth at 36 weeks—my little girl was just fine, 6 pounds 7 ounces. We took a picture of me holding her at Georgetown University Hospital, where I receive cancer care. I had on a headscarf because I was bald, and she had a full head of hair! After she was born, I had additional chemotherapy, a mastectomy, and radiation. I’m still taking medication to reduce the risk of recurrence and following up with doctors, of course.

ONC You have several doctors?

CRUM Yes—I go to a primary care physician, who has to write referrals for all the specialists I see. I go to my oncologist for the breast cancer. I see her twice a year. I also go to a gynecological oncologist who keeps a check on other issues. And then I have been going to my breast surgeon twice a year.

I live in Northern Virginia, near Washington, D.C. My cancer care is at Georgetown University Hospital, in Washington. But because of my insurance, I’ve had to have my mammograms and MRIs in Virginia. Because my medication can affect bone density, I have to have bone scans. Those have to be done in Virginia, too.

ONC Georgetown has gone from paper-based to electronic records. Can you tell us a little about your experiences before and after Georgetown converted to electronic health records? Has it made a difference for you?

CRUM Yes! Even now I still see doctors at Georgetown at least six times a year. It used to be that whenever I had a mammogram or an MRI, I had to pick up the films in Virginia, take them to Georgetown, and then return them to Virginia. I was doing a lot of shuttling. But now, they just send the images electronically to each of my providers. It’s fantastic! I don’t have to do anything. They also transmit my bone density scans electronically.

I think it’s helpful to everyone because the whole process is smoother. Even if there would be an issue, the doctors at Georgetown will have a chance to review and study the films before my appointment. When I was bringing in the films myself, they would be looking at them for the first time while I was right there.

ONC Have you seen other benefits from the electronic health records conversion?

CRUM I have a lot of different medications—my cancer drugs and dietary supplements—and every time I go in for an appointment, they need to know what I’m taking. I used to have to make a new list each time! That’s hard, especially when you need to recall all the proper dosages. Since Georgetown moved to its electronic system, my providers just hand me a paper that shows what I was taking last time, and it’s so much easier for me to take a look and say what’s changed and what hasn’t. I just feel like they get a better picture of my medication currently and historically. And it’s easier for me.

Also, my two oncologists at Georgetown can look at my electronic health record and see what blood tests are due, and put everything on the same order for the blood draw. I used to have two separate pieces of paper for the draws, and sometimes it meant separate trips to the lab. So, that’s better too.

ONC What stands out most in your mind about the change to electronic health records?

CRUM The most obvious advantage is it makes it easier for me personally because I don’t have to do as much paperwork, or as much physical transportation of records, when I’m trying to coordinate information with different doctors, locations, facilities.

I would say it’s made my quality of life medically better.

I also feel like it gives me real peace of mind. Because all of my providers can see all of the test results and films, I feel like I have more people monitoring my health, being able to see something that might be a concern. My providers have better access to a full picture of my health, and I think that means better medical care. It just makes it so much better to feel like everything is being done to make sure that I stay healthy and cancer-free.

ONC Thanks so much for sharing this with us. I understand you’re a peer mentor at Georgetown?

CRUM Yes. I’ve been a volunteer with the Georgetown University Hospital’s SOS (Survivors Offering Support) program for about two years. I’ve mentored three or four women over a period of time. My type of cancer is sort of rare, so I’ve also done phone calls to answer questions from women who have that diagnosis or who are pregnant when they receive breast cancer treatment. I’ve also talked to women who are thinking about reconstruction surgery.

ONC Anything else you’d like to share?

CRUM I’ve been thinking about my daughters. My 6-year-old and 10-year-old. They’re just great. Looking back, when I was diagnosed with breast cancer during my pregnancy, it was just devastating. We didn’t know how this was going to turn out. But it turned out beautifully, we were so very fortunate.

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