At a time when patients should be focused on boosting health, keeping up with daily obligations, and spending time with friends and family, many must also manage breast cancer patient records to ensure the best care for themselves.
The paperwork involved in collecting and managing medical records has been deemed a necessary evil. Some cancer centers give patients and caregivers step-by-step instructions to access and compile records themselves because medical records are critical for the treatment process, second opinions, and access to clinical trials. However, the process of records management can be overwhelming.
Records retrieval: Scattered data and lost time
If you’ve just been diagnosed with breast cancer or are looking for advanced care, it’s important to know that your records belong to you. The Health Insurance Portability and Accountability Act (HIPAA) limits how healthcare organizations share personal data, but you, as the patient, are entitled to your records. The American Cancer Society recommends that patients have copies of the following information:
- Pathology report from any biopsy or surgery
- Copies of imaging test results (CT or MRI scans, etc.)
- Operative report (if surgery was involved)
- A copy of the discharge summary, if hospitalized
- A summary of the current or proposed treatment plan(s)
- A list of all drugs, drug doses, and time(s) of ingestion
- If you had radiation therapy, a copy of your treatment summary
Patients often assume that digital files can be easily shared. The reality is that there are various hurdles, such as:
- Scattered records: Patients often visit several locations for medical care and may be able to download records via patient portals or must wait for files to be sent. In either case, organizations typically can only give data generated at that location, resulting in patients having to round up records from doctor’s offices, hospitals, and clinics.
- Incompatible formats and unorganized files: Sometimes, patients are given CD-ROMs, faxes, or other formats that are not user-friendly. Doctors have lamented wasting time searching through volumes of data to find pertinent files and having to adjust for incompatible formats or improperly coded information.
- Delays: While organizations have gotten better at sending records or making them available via patient portals, there are issues with delays, particularly with images and other, more complex data sets. Some patients may wait weeks for records.
- Records deleted: Federal law does not require organizations to keep records for extended periods of time, making some records irretrievable if too many years have passed.
- Updating records: When new tests or procedures are performed, patients may face additional efforts to obtain and share updated records.
- Inefficient use of data: Having a patient’s records solely viewed by a small circle of physicians can limit the potential of that data to aid in identifying the best treatment options.
Manage breast cancer patient records seamlessly
Ricki Fairley, the CEO and founder of Touch, The Black Breast Cancer Alliance, began her advocacy work after successfully battling a stage IIIA triple-negative breast cancer. She realized how difficult compiling records was while helping a friend enroll in a clinical trial.
“It took us three weeks to get her records together to apply for this thing,” recalled Fairley. “We spent hours on the phone trying to get her scans from various hospitals.” After receiving preliminary approval, her friend was ultimately excluded from the trial. Fairley said she was “blown away” when she heard about Ciitizen, a free service that compiles needed records and matches patients with clinical trials. She tried it out with her own records, which spanned two states and various locations. “Within two weeks, I had all my records in the same place, and all I did was click,” she said, recalling her friend’s medical records ordeal. “It would have saved us all that time.”
Records that work for patients
The beauty of data is that it can work for you while you sleep, eat, work, or relax and enjoy life. The harnessing of algorithms and reams of data allows Ciitizen to provide an opt-in Clinical Trials Program, currently open to advanced or metastatic breast cancer patients, that matches patients with potentially life-saving clinical trials automatically, without extra work for patients. The program scans hundreds of clinical trial options and creates a customized report of all the trials that match a patient’s treatment history and geographical location.
Why enroll in a clinical trial? One study showed that cancer patients in the United States gained more than 3.34 million combined years of life due to clinical trials run by the SWOG Cancer Research Network. Despite this, less than 10% of cancer patients will take part in a clinical trial. A lack of participation is the biggest reason that clinical trials don’t run. Some groups of people, including African Americans, are disproportionately under-represented in trials. Unfortunately, there are many hurdles for patients who might otherwise enroll.
Currently, many patients rely on a hit-or-miss approach, such as going to the website ClinicalTrials.gov or relying on their doctor’s knowledge of what’s available, which can be limited. There are also misconceptions about clinical trials that may steer some away. However, one study showed that many patients don’t enroll because trial locations are too far away or they did not know that they may be eligible to enroll.
Breastcancer.org is among the organizations that advise patients to be proactive about gathering records, and it encourages them to explore all their options. The organization has partnered with Ciitizen to help patients aggregate records and find clinical trials. Armed with compiled data, patients also have the option of sharing records to contribute to research and potential cures. Ciitizen has also partnered with IQVIA, the world’s largest clinical research organization, and METAvivor, a national non-profit organization dedicated to funding research for stage IV metastatic breast cancer.
Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures. Ready to control all of your medical records in one place? Sign up today in less than 5 minutes!