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New Registry Helps Blood Cancer Patients Manage Medical Records

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Key Takeaways

  • Blood cancer patients, and others with severe and chronic illnesses, often encounter difficulties transferring their medical records between providers.
  • The Leukemia & Lymphoma Society (LLS) has developed a voluntary patient registry to gather more data from blood cancer patients.
  • LLS hopes that the data it collects will advance future blood cancer research, including studies on the efficacy of the COVID-19 vaccine in blood cancer patients.

The Leukemia & Lymphoma Society (LLS) is calling on blood cancer patients to enroll in the LLS National Patient Registry. It can be challenging for patients to coordinate the sharing of their medical records between the multiple treatment teams involved in their care.

To address these difficulties, the LLS created a platform, in partnership with Ciitizen, a company that compiles medical records digitally, that patients can opt into and easily access their medical records across healthcare systems. The LLS also hopes that the patient data from the registry could be useful for future research.

Collaboration With Ciitizen

Anil Sethi's, founder and CEO of Ciitizen, younger sister, Tania, was diagnosed with metastatic breast cancer. During the last six months of her life, Sethi's family had to travel across the country to 17 different institutions, seeing 23 different specialists, while having to reiterate her medical history and data during each visit.

After her death in 2017, Sethi left his job as Apple’s Director of Health Records to create Ciitizen, which gives patients power and control over their own health data. It also provides clinicians with the information they need to make more accurate and timely treatment decisions about a patient's care.

Easier Access

Sethi tells Verywell that the most critical health information, such as imaging test results and physician’s clinical notes, are typically stored as PDFs or hard copies—which make them more difficult to convert into computable data, such as diagnostic and procedural codes. He set out to improve access to these key records.

“We had to build a machine that knows how to read the clinical text in those documents, turn those texts into computable terms, and store medical records in digital format that patients can take to multiple providers,” Sethi says.

Aiding Research

In addition to keeping medical records in one secure place, LLS envisioned that researchers could use stored data to track trends and provide future clinical trial topics.

“We imagined that the registry could provide answers to questions that patients themselves help generate, not just questions that the doctors or pharmaceutical companies want to know,” Gwen Nichols, MD, chief medical officer for LLS, tells Verywell. “We could also find out about ill-effects of therapies or unusual complications that happen much faster because we share the data. Then it would generate ideas for LLS to support research.”

What This Means For You

If you or a loved one is a blood cancer patient, you might want to join the LLS registry to help manage and coordinate your medical records and even contribute to research. Visit Ciitizen's website to learn more.

How Does the Registry Work?

When a patient requests to join the LLS Registry, Ciitizen will reach out to their healthcare providers on their behalf. Patients then have access to any medical information that Ciitizen collects via a secure patient portal.

Gwen Nichols, MD

We imagined that the registry could provide answers to questions that patients themselves help generate, not just questions that the doctors or pharmaceutical companies want to know.

— Gwen Nichols, MD

“We will tell patients, 'We are going to be studying x. Do you consent to be part of that research study?'" Nichols says. "We aren’t randomly looking at that data without a purpose in mind. They have the option to say no."

All medical records are de-identified for any data collection or research purposes, and LLS notifies patients before using their data for any reason.

The Registry and COVID-19 Vaccines

Many cancer patients are leery of receiving the COVID-19 vaccine because thus far, no large vaccine trials have included cancer patients.

“Ever since vaccinations started, we’ve been getting calls from patients with understandable concerns about getting the vaccines and whether the vaccines will work,” Nichols says on behalf of LLS. “We’re not giving medical advice. We say you should talk to your doctor, but doctors are saying, 'We just don’t know. You should probably get the vaccine.'”

Addressing Worries

“If you are an active blood cancer patient, your risk of death [from COVID-19] may be as high as 30 to 40%," Nichols says. Even though they are aware of the risks, many people with cancer are confused or worried about getting vaccinated.

The main concern for cancer patients who are on chemotherapy and other drugs that suppress the immune system is that their compromised immunity will prevent them from responding to the vaccine—so they may think they are protected when they are not.

At the same time, it is dangerous for patients who are receiving immunosuppressive therapies to get viral infections, which makes the concerns about vaccine efficacy even more prominent.

“We believe that for most patients it should be in their best interest to get vaccinated," Nichols says. "However, we have no idea how well they will make antibodies to the vaccines."

Of the approximately 400 patients who have enrolled in the LLS National Registry to date, about half of them reported safely receiving the COVID-19 vaccine.

Research into the effectiveness of the COVID-19 vaccines in cancer patients is ongoing. The LLS hopes to gain more significant insights from patient data in the registry.

Should Cancer Patients Get Vaccinated?

In the meantime, Nichols advises that all cancer patients should discuss the COVID-19 vaccine with their providers, and most should receive it. “Unless you have a reason not to get any kind of vaccination, there’s no reason to think that cancer patients are at any greater risk for vaccine complications," Nichols says.

However, Nichols also warns that getting a COVID-19 vaccine does not eliminate the need to keep wearing face masks, maintaining social distance, and practicing proper hand hygiene.

“My biggest concern is that people will get vaccinated, feel like they are safe, start going out into public more, and they won’t be protected as well as they think that they are,” Nichols says. “That would be heart-breaking.”

A Patient’s Experience With the LLS Registry

In 2010, Larry Saltzman was diagnosed with chronic lymphocytic leukemia (CLL). At the time, he was 56 years old and a practicing family physician. “I’ve delivered the words myself,” Saltzman tells Verywell of his cancer diagnosis. “They’re not easy to deliver, but they’re even worse to hear.”

For the first three years of his illness, Saltzman was still able to run marathons—a physical activity that he enjoyed. In April 2013, he completed the Boston Marathon and was the inspirational speaker of the year at an event luncheon. It was there that he met the CEO of the LLS, who told him about the National Patient Registry, which was still in formation.

Saltzman became the first patient to officially join the LLS National Registry and he remains an active leader in the LLS Community.

The Future of the Registry

Sethi says that collaborative medical records can be useful to tumor boards that review complex cases as well as for patients who seek opinions from additional physicians.

“The role of Ciitizen in this collaboration is to create a safe and secure system to collect data for essential research," Sethi says. "We think it’s a fair way to engage patients and give them a voice in the process."

Saltzman encourages all blood cancer patients to participate in the LLS Registry to benefit future patients and those who are working to advance cancer treatment.

“I would say that my personal journey has value, not only to my family and myself but to someone else who is caring for me,” Saltzman says. “As a blood cancer patient who is currently in remission, I feel that this is a bridge to the next treatment. I want as much information as possible to be available so that when I require another treatment, there is data to help me.”

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