Coordinating Your Care While Battling Breast Cancer Can Be Tough: This Group Can Help

• A program run by breastcancer.org and Ciitzen helps people with breast cancer coordinate their care.
• The online platform stores medical records in one place and makes it available to patients, doctors, and others.
• Experts say this coordinated care helps people with breast cancer focus on other important issues such as treatment decisions.

Treating breast cancer often takes a team of doctors.

Among other things, health records might be scattered among several medical practices, hospitals, and treatment centers.

Having access to that information can have a direct impact on treatment decisions.

For people with breast cancer, coordinating care can be a frustrating and time-consuming process.

That’s why the nonprofit organization Breastcancer.org and health records tech company Ciitizen are teaming up to help people with breast cancer access medical records and house them in a single location.

Once Ciitizen gathers the records, users of the platform can see test results, view scans, and review their treatments.

They have the option of sharing this information with doctors, family members, and caregivers, as well as medical researchers.

Why easy access matters

“A patient just diagnosed can be overwhelmed, confused, and anxious,” Dr. Marisa C. Weiss, Breastcancer.org’s founder and chief medical officer, told Healthline.

“You don’t know where to start. Life is out of control. How do you pick doctors and start to gather information? Even within the same hospital it can be a challenge pulling records together so you can easily and smoothly move from one doctor to another and one type of treatment to another,” she explained.

Weiss, a breast oncologist practicing in the Philadelphia area, wants people with cancer to have continuity of care.

Having your health data at your fingertips is essential to that goal.

Wasting time and energy rounding up medical records means less time discussing decisions that have to be made, said Weiss.

She noted that quick access to medical records is crucial when dealing with time sensitive matters such as genetic mutations that require particular treatments.

It’s also important for people who have a recurrence of breast cancer. You can’t decide on treatment until you have the specifics of previous treatments.

One example of this is doxorubicin (Adriamycin), a chemotherapy drug often used to treat breast cancer.

Because it increases the risk of irreversible heart problems, you can only receive a certain amount during your lifetime.

Breast implants are another example. When a problem is identified, or there’s a recall, you may have no idea what type of implant you had 10 or 20 years ago.

“You always need to know how you were treated originally. That’s a big challenge,” she said.

“Today most records are electronic, but only a few years ago a lot of important information was on paper. Hospitals are only required to hold them for 10 years,” explained Weiss.

Knowing your rights

“You have a right to get your data. It’s the law. You don’t need to ask permission or beg for it,” said Weiss.

“It’s pivotal in getting the best care possible for yourself and can benefit your family as well,” she continued.

Deven McGraw, Ciitizen’s chief regulatory officer, told Healthline that individuals have broad rights to their data under the Health Insurance Portability and Accountability Act (HIPAA).

“Many patients now use portals where they can view certain information in their medical records, but it’s not complete. They might see their medications and labs, but not images and notes from doctors, and for cancer patients that’s where all the detail is,” she said.

McGraw explained that when they began, it was a struggle for Ciitizen to get information because providers are understandably protective of it.

That’s why the platform requires a government issued ID and online signature to proceed.

“It has taken a bit of time for medical records departments and doctors’ offices to get accustomed to it. We do a fair amount of education of staff,” she said.

According to McGraw, Ciitizen is usually able to get records within 2 weeks, though federal law allows up to 30 days.

“It’s particularly important to establish relationships with medical records departments. If you’re just diagnosed, you want those records quickly. If you’re having a recurrence, you need records from the first set of treatments,” she explained.

The platform

Although the program is still in the beta phase, those who sign up have full use.

The platform is open to people currently being treated for breast cancer and those who’ve had breast cancer within the past 10 years.

McGraw said the platform has more than 1,000 profiles and continues to grow.

“People are amazed at the depth of data and how they don’t have to lift a finger. It’s their first time viewing a picture of their tumor or notes from their surgeon,” she said.

McGraw advised that the platform doesn’t just upload realms of documents and leave it to patients and doctors to sift through.

Ciitizen’s software extracts relevant data and provides a summary across all providers. This includes test results, treatments, and information about comorbidities. Patient and doctor can click on the data to go to relevant pages for more detail.

“Doctors will see the date and the institution and know it’s valid, so they’re more likely to rely on it,” said McGraw.

People with breast cancer can set up a profile through any internet browser.

McGraw explained that Ciitizen uses state-of-the-art encrypted transport and storage to protect data. IDs are stored separately from clinical data, which isn’t shared without users’ consent.

Through the partnership with Breastcancer.org, users will have access to support and relevant information about their particular type of cancer and treatment.

While the site may display banner ads, there are no plans for targeted advertising based on personal data. There’s currently no charge to use the platform.

“We think enough individuals will want to share their data for compensation so we can fund the platform without charging people. Data is valuable for research purposes and we definitely want to make sure there’s a return of value for individuals who share their data,” said McGraw.

Next steps

Ciitizen’s founder, Anil Sethi, vowed to help people with cancer after losing his sister to metastatic breast cancer in 2017.

But breast cancer is just the beginning.

Ciitizen is also in partnership with the Cholangiocarcinoma Foundation, making the platform available to people with this rare bile duct cancer.

“Ultimately, we’d like to have Ciitizen be the global patient-controlled platform for people dealing with serious illnesses of all types,” said McGraw.

Weiss acknowledges that doctors are slow to change on this front.

“This step we’re taking is seismic. What this will do over time is level the playing field and progress to the goal of patient-centric care,” she said.

“When you have breast cancer, the last thing you need is to try to figure out who to call and what to ask for. The logistical legwork is exhausting. At breastcancer.org, our mission is to get people the information they need as soon as possible so they can share decision-making. With their own data, they can benefit from that, feel more in control, and take steps to overcome challenges in life,” said Weiss.

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