Breast Cancer Portal to Help Patients, Doctors

BOSTON -- A secure patient portal that accesses a digital image repository is being welcomed by both doctors and U.S. breast cancer patients, who often have to carry heavy films and CDs to appointments. The portal further ensures that those appointments can proceed as planned with necessary data about patients easily accessible and enables patients and their families to be more involved in their treatment.

I3Archive, along with IBM, formally unveiled MyNDMA, in mid-November. MyNDMA is a patient health-management portal to i3's National Digital Medical Archive (NDMA), a grid-based repository of digital mammography images and related data. Once a female patient has signed up for an annual US$14.95 subscription to the portal, digital mammograms can be uploaded and stored there and she can determine which medical professionals have access to the images.

MyNDMA includes other features such as the ability to opt into clinical trials, a calendar to remind patients of upcoming appointments, a place to keep a health journal to track the course of the disease, a family tree builder to help determine disease risk factors, links to support groups, and the location of digital imaging facilities. There is also the option for $25 to digitize a film-based mammogram.

Kim DiCiccio is a breast cancer survivor who has endured two crippling bouts with the disease, the first occurring 10 years ago when she was 32, with a recurrence five years later. She has had numerous health appointments over the past decade. "Every time I went through another step, I had to make sure my film was with me," she said. "No doctor, no second opinion will look at you without your film." Patients can't retain their mammograms, so DiCiccio would have to go and physically get the images from the facility storing them, take them to her appointment, and later return them to the original facility.

The last thing any patient battling a deadly disease needs is an additional burden, according to DiCiccio. "With the turmoil of all this, you're just not thinking clearly," she said, so it's easy to forget images on yet another trip to the doctor.

With MyNDMA, an enrolled patient can electronically ensure beforehand that the physician will have access to mammograms. "It makes life so much easier," DiCiccio said.

The main reason DiCiccio prefers the hospital she goes to is that it's home to most of her films. With MyNDMA, should she want a second opinion from another facility, "I can just go and do that," DiCiccio said. Lisa Weinstock, M.D., director of Women's Digital Imaging of Ridgewood in Ridgewood, N.J., also welcomes the flexibility that MyNDMA provides to her patients. "Women love the idea of controlling and having access to their own records," she said.

Many of Weinstock's patients travel or move frequently and find it a major problem to ensure that their medical records follow them. "Time and time again, you hear about records being lost," she said, whether through bad luck, natural disaster, or the closing of facilities. "Patients can be delayed months in getting their images," Weinstock said.

DiCiccio has three daughters. She said MyNDMA will be a useful resource for her children in the genetic testing they'll need to ascertain whether they are likely to develop the disease.

Diane Hockstein, vice president of consumer affairs at i3 Archive, sees the portal as beneficial for those who, unlike DiCiccio, don't talk to their families about their breast cancer. "MyNDMA is a foundation, an open door to start a discussion," Hockstein said. "It's important to talk about it."

"Breast cancer has so many new treatment options now, and there's so little time to find out about them that the burden falls upon the shoulders of women," said Marisa Weiss, president and founder of nonprofit organization "Their lives depend on this. It's wonderful to empower women with medical information."

An oncologist with her own practice, Weiss started the Web site as a way for women to access the best medical information available, she said. The site is in its sixth year and receives about 9 million visitors annually, according to Weiss.

Every time a patient goes to a doctor's office, staff have to put together a chart, often involving phone calls to different specialties, including surgery, oncology, and radiology. "It takes an enormous amount of time to pull it all together," Weiss said. "With a centralized resource, you can go from doctor to doctor in a much more powerful way. You can streamline an inherently inefficient process."

The NDMA repository holds digital images from 350,000 patients, representing 1 percent of the 35 million U.S. women who have mammograms taken every year, according to Derek Danois, president of i3 Archive. Twenty-four hospitals and imaging facilities across the U.S. have access to the repository, with the largest concentration of those in the Northeast.

Mammograms today range in size between 40M bytes and 160M bytes per image, according to Danois. However, with the advent of digital tomosynthesis, a technology currently used for research purposes, much larger images on the order of 1G byte per patient are on the way. Also known as TOMO, full-field digital tomosynthesis involves taking multiple breast X-rays at different angles and then creating a 3-D picture. In testing, the technology has appeared to be more accurate than traditional mammograms at highlighting breast lesions. The procedure itself also requires less pressure on a patient's breasts, making the procedure more comfortable.

I3 has been commercially selling NDMA for about a year. The company's distribution partner is GE Medical Systems, which resells i3's NDMA every time it sells a new digital mammography unit, Danois said. "In the next year to 24 months, we'll see a really big explosion [in the number of hospitals using NDMA]," he said. "My likely estimate is that we could reach about 10 percent of the population by end of 2006, about 3.5 million women."

The idea for NDMA came about six years ago when researchers at the University of Pennsylvania began thinking about a new way to manage increasingly large digital mammograms, Danois said. The development work to create the repository was undertaken by a consortium of the National Scalable Cluster Lab, Oakridge National Labs, and hospitals at the University of Pennsylvania, the University of Chicago, and the University of North Carolina, as well as Sunnybrook and Women's College Health Sciences Centre, which is affiliated with the University of Toronto.

Funded by a four-year U.S. federal grant of US$16 million, the consortium created the NDMA repository using IBM technology. I3 was formed to commercialize the product in April 2003 and has invested just over $7 million in that process, according to Danois.

Originally serving as a repository purely for mammograms, NDMA used to stand for the National Digital Mammography Archive. I3 renamed the product the National Digital Medical Archive in June to indicate that it can handle a wide variety of medical data. So far, that mostly means other breast imaging files, including ultrasound and magnetic resonance imaging.

"The system was always designed to manage all data types," Danois said. Over time, the system will be expanded beyond breast imaging and women's health to be a repository of images related to a variety of illnesses. I3 Archive is talking to companies that specialize in digitizing patients' notes so that the repository will ultimately be able to house an individual's entire medical history, in text and images, Danois said.

Danois believes the grid architecture and on-demand model have played a crucial role in the repository. "It could never be managed with traditional infrastructure," he said. "We're not using grid [technology] in the way a financial institution might; it's all about large data types, hospital workflow, and privacy concerns."

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