Understanding the complexities of finding clinical trials
Breast cancer patient Alyson Tischler was initially diagnosed just months after having a baby. Treatment sent the disease into remission, Alyson said, but it re-emerged ten years later as triple-negative metastatic breast cancer. A broken medical record system compounded her difficulties. Not only was Alyson struggling to find an effective treatment for the aggressive cancer, but she also had to grapple with the laborious process of getting all the required paperwork to the specialist whom she had selected for further treatment.
“It was the last thing I wanted to be dealing with, having to be a project manager with my own data when I was going through so many other challenges,” Alyson told Ciitizen. “It was a highly-wrought emotional time for me; I was coming to terms with the fact that my treatments didn’t work, and here was this other chore being thrust upon me.”
That type of frustration helped prompt the founding of Ciitizen, a free breast cancer medical records organizer and clinical trial matching service. After the death of his sister, Tania, from metastatic breast cancer in 2017, Ciitizen founder and CEO Anil Sethi discovered that there was information in her fragmented health data that could have extended her life. Anil subsequently launched the Ciitizen breast cancer medical records organizer to provide organized and easy patient access to shareable digital health records.
Anil knows from personal experience that patients need complete medical records to obtain care on multiple levels. Records help patients give their family and caregivers the information they need to provide and coordinate care, they make getting a second opinion easier and faster, and most importantly, they can help patients find better treatment through clinical trials for which they fit the criteria.
But every institution has a different record distribution system, so there’s no single process or standardized method for patients to follow. Many institutions require patients to jump through multiple hoops and deal with many different departments. The confusing process of chasing down records from numerous medical institutions also creates a great deal of wait time and hassle.
Tallulah Anderson’s experience of when the doctor who initially treated her for breast cancer retired is illustrative. With her new doctor more than an hour away, Tallulah had to drive hours back and forth to provide her new health care team with her old imaging and records, as she recalls in a Ciitizen profile. “I had to pick up a CD-ROM one time and drive it over to my other doctor, who couldn’t even look at it” because the electronic health records were incompatible.
Following expert advice for obtaining copies of all patient records is a daunting prospect at best. Breastcancer.org, a nonprofit organization providing breast cancer information and support, recommends several steps that despite their helpfulness, could quickly become burdensome to patients who have gone through numerous procedures.
As a breast cancer medical records organizer, Ciitizen tackles those tasks to help patients track down and organize their medical records. Once it collects patient health records directly from the designated health care providers, patients can access their records through their online accounts. Patients can then share their information with anyone they choose, simply and easily. All they need to do to grant access is provide an email address for the record recipient. Patients can also establish how long that access is available, as well as revoke it at any time.
While Ciitizen aims to overcome the obstacles that prevent patients from aggregating their information, the organization’s focus is squarely on paving the way for patient participation in clinical trials.
Ciitizen administrators believe that cures start with clinical trials. While patients may be aware of clinical trial go-to websites like https://clinicaltrials.gov, medical record logjams can prevent them from finding the trial that’s right for them. Without a breast cancer medical records organizer that can provide complete access to records, patients may not have the information they need to find potential clinical trials or know whether they qualify for them. Moreover, many of the National Cancer Institute’s steps for finding a clinical trial assume that patients have full access to their records.
With an eye toward overcoming such obstacles, Ciitizen uses its digital medical records service to help patients find the right clinical trial options.
Advanced and metastatic breast cancer patients have the option of leveraging their patient treatment and care information to tap into Ciitizen’s free clinical trial matching service. It matches a patient’s medical record data with all the breast cancer clinical trials being run in the United States to provide patients with a personalized report of the ones for which they pre-qualify. The report also shows if patients are qualified for clinical trials with Ciitizen’s partner, IQVIA, the world’s largest clinical research organization.
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!