I often see the brown padded envelopes in the bottom of my closet: my secret holdings of lab results, slides, and other information on the diagnosis of my breast cancer in 1999 and 2001. My films – from numerous mammograms and several MRIs – are at one of the hospitals where I've been treated – Denver, Chicago, or maybe Kansas City, Mo., my hometown.

Perhaps I am revealing my own disorganization but more than that, I face what patients everywhere face – tracking personal health information in a world where people move across the country, doctors need but don't have vital patient data, and where, often, it's difficult to find the films, the missing chart, the last blood test, and so on.

At age 52, I understand first-hand the cooperation and compliance needed to maintain individual health information. In 1978, at age 25, I was diagnosed with insulin-dependent diabetes. Six months later, I had surgery for what turned out to be thyroid cancer.

My thyroid cancer returned in 1999, again in Chicago, where my endocrinologist found a lump in my neck. The biopsy was positive – cancer, thyroid cancer – again. The questions began: What kind of treatment did you have after your thyroidectomy in 1978?

I had no idea. I had a vague recollection of what had happened, but no records. Again, I couldn't remember the surgeon's name. The hospital records contained a vague write-up. The internist who treated my diabetes in that era had died. I knew his name but again, no records existed.

At the same time in 1999, I received a call from the breast center to return for another mammogram because my current mammogram had an unusual spot on it when compared to my year-old films from Kansas City. I soon had a biopsy that was positive. Calcification the medical team said. We got it all. The biopsy was positive and even though "they got it all," I still needed to have a lumpectomy for the breast cancer.

About three weeks later, in fact, I had two lumpectomies – one for the thyroid cancer and one for the breast cancer. As I waited for surgery, the anesthesiologist said, reviewing a chart, "Now, we're doing surgery on the right breast…" Unfortunately, he had the wrong breast, and fortunately, I could provide the right information.

This was an outpatient surgery and I went home that evening. And two years later, in 2001, I had another lumpectomy in the same breast for a spot of DCIS breast cancer that it appears was missed in 1999. Radiation treatment followed.

With this type of medical history, diabetes now for 26 years and cancer four times before turning 50, I have spent a lot of time carrying films to different oncologists for opinions. I have had paper records transferred to various physicians in different locations. I have had the same medical history questions repeatedly asked in the same hospital because "we don't have access to that department's information."

I have been lucky because my health is stable. My diabetes is in good control, no complications, and the cancers have been non-invasive.

But effective treatment for any health situation requires historical information about an individual's health status. Some of mine is missing, with other data safe and sound in a paper chart that sometimes can be found and, at other times, well…

I do need to clean my closet floor, and I hope to replace those brown envelopes with a card, in my wallet (and not the closet) that I can carry that contains my vital health information. I want physicians to use that card, or better yet, the department's system that is interoperable through IHE profiles and common standards, to access my films, lab reports and other pertinent information. I want my blood sugar results electronically sent to and entered into my EHR.

With clinical decision support in place, I should receive annual reminders of mammograms, ophthalmology exams, and flu shots, Instead of leafing through thick paper files, my doctor should be able to find current and past medical information with just a couple of computer clicks.

As a patient and consumer of healthcare, information leads to power, and information technology, used effectively and consistently in the delivery of healthcare, simply can improve or extend life. n

Joyce Lofstrom is corporate communications specialist for the Healthcare Information & Management Systems Society. In that role she manages all public relations activities for HIMSS, including strategizing media relations activities, writing press releases and speeches, and handling reporters' queries.