Blog from August, 2021

Welcome to the CodeX Blog—we recently talked with cancer patients, survivors, and advocates to hear their stories and learn more about their perspective through the cancer care coordination process. CodeX (Common Oncology Data Elements eXtensions) is a HL7 FHIR Accelerator, launched at the end of 2019, that is building a community to enable interoperable cancer data modeling and applications that lead to step-change improvements in cancer patient care and research.

Author: Omkar Ratnaparkhi

Bias in Healthcare is Deadly

“It’s almost like negligent homicide. Because of the bias that’s there—whether it’s explicit or implicit—is resulting in these people—patients of color—not receiving the full scope of care that they should be.” Jamil Rivers is a person with breast cancer and the Founder of The Chrysalis Initiative. The Chrysalis Initiative is a patient advocacy organization looking to disrupt harmful disparities in accessibility, quality, and outcome of cancer care. Looking at the source of disparities is the first step to rectifying them, and The Chrysalis Initiative provides equity assessments that evaluate all types of healthcare services that offer cancer care. The assessments evaluate whether the experiences of patients of color differ from White patients. When Jamil first started the equity assessments, she expected around 50% of patients of color to experience racism and bias. However, Jamil quickly discovered that this number was much higher, “90% of our preliminary data indicated that they [patients of color] were receiving substandard care and experiencing racism and bias in their care.” According to Jamil, many medical providers and researchers are cognizant of racism and bias affecting patients, but few understand the true pervasiveness of explicit and implicit racism in patient care. Even biases that at first glance seem trivial can be deadly because each action based upon bias deteriorates the quality of care a patient receives.

Ensuring Trust and Continuity in Care for People of Color in the Healthcare System

“Do they have the sufficient resources to trust and verify? It’s the same thing with law enforcement and education and other aspects of society. If you are a person of color, you understand that you might have to potentially do those extra verifications.” Jamil, like most people of color, experiences racism in many aspects of modern-day society. Therefore the skepticism seen in communities of color towards healthcare providers is rational. Jamil shared “It totally makes sense to have that skepticism and it can be healthy. The only way it can be dangerous is if you’re not engaging with the medical system at all.”

Jamil explained, one specific reason people of color are skeptical of the healthcare system is because of disparities in continuity of care caused by racism and bias, “If you [the medical provider] don’t value a Black or Brown life the same way you value a White life, then it’s hard to make that connection that it should be that same level of urgency and continuity when ensuring that person is getting optimal care.” Jamil detailed how many patients of color notice disparities in the quality and continuity of care that they receive, “I run into situations where despite the standard operating procedures, White patients will receive a certain level of care and continuity, but Black patients don’t. And, when the Black patients or Brown patients ask about it and say, ‘Well why can’t I have access to that?’, there are sometimes intimidation tactics brought on and hostility, or they’re threatened to be discarded from the health system for questioning.”

Ivis S. is a breast cancer survivor and patient advocate who works to enhance the quality of care of Asian, Black, and LatinX patients. Racism and bias are not the only factors challenging the trust between patients and the healthcare system. Structural barriers prevent access to better care for many—including language. During her work as an advocate, Ivis encountered many situations where English was the only language used in consent forms. Ivis even had to ask health administrators – “If you weren’t French and an informed consent form was in French, would you sign it?” – because even when some healthcare providers know a patient can’t read English, they still give them consent forms in English. Consent forms are not the only area that language barriers deteriorate patient-provider trust. Ivis was once working with a panel of young doctors and did a mock cancer diagnosis of a doctor in Spanish, and then said, “Now you know what it feels like, to be diagnosed with a deadly disease, where you know nothing [about] what they’re telling you, but you do understand the word cancer and know that it can be deadly.” All of the young doctors’ worldviews shifted, because they had previously subconsciously assumed that it was the patient’s role to understand the diagnosis—even when it was in an unknown language. This language barrier is just one of many barriers that minority patient populations might experience, throughout their cancer care.

In addition to biases based on race and ethnicity, there are other types of bias that negatively impact cancer care. Ivis directly experienced the negative effects of bias as a young mother. Because of her age, Ivis’ OB-GYN doctor continued to assure her that the sensations she had been feeling in her breast for 18 months was normal. “The bias was that I was a young woman—and I was healthy—so I was not the norm.” Ivis’ diagnosis was delayed for 18 months because of her doctor’s ageism, and in October of 1993, she was diagnosed with breast cancer. A few days before the diagnosis, a sonogram showed something bigger than a dime in her breast. Ivis was told to come back after 6 months, but she demanded to see a surgeon immediately based upon what she had read from a magazine on breast cancer symptoms. Ivis went to call the surgeon and realized something shocking, “I realized he was in the same office building [as the OB-GYN doctor], and then they gave me the directions and everything and I realized he’s actually on the same floor as my OB-GYN.” It turned out that the surgeon who would diagnose Ivis with breast cancer was only a few feet away across the hall from her OB-GYN. “Something that really stood out to me was that this doctor [the OB-GYN] could have said, ‘You know she keeps questioning, she keeps saying something’s wrong, let me take her to [the surgeon]’, but that didn’t happen.” A few days later Ivis found out that she had cancer based upon the results of a biopsy. Ivis’ OB-GYN’s bias prevented him from being proactive, listening to Ivis, investigating her concerns, and he never once decided to consult his nearby coworker—the surgeon—who ultimately diagnosed Ivis. Despite being diagnosed later than she could have because of her OB-GYN’s bias, Ivis is now a two-time breast cancer survivor and patient advocate. Unfortunately, countless other patients who face biases are not as fortunate.

Better Data can Lead to a More Equitable Healthcare System

Bias and structural barriers in healthcare can be alleviated using standardized data. Jamil explained, “The more data the better, and the more tech the better.” By streamlining the process of interaction between the patient and provider and limiting manual entry and collection of data, bias can be curbed or eliminated. Also, data that is standardized can provide insight into disparities in quality of care. Many White service providers are not cognizant of their biases or don’t realize the effects of their biases, but after seeing data from equity assessments their eyes are opened. “Once you see, you can’t unsee. It just makes their engagement with patients of color that much better. And, they’re also holding other staff members accountable to make sure it’s equitable across the board.”

Omkar Ratnaparkhi is a rising senior at Fordham University and is sharing patient stories to highlight firsthand accounts of the cancer patient experience.

Welcome to the CodeX Blog—we recently talked with cancer patients, survivors, and advocates to hear their stories and learn more about their perspective through the cancer care coordination process. CodeX (Common Oncology Data Elements eXtensions) is a HL7 FHIR Accelerator, launched at the end of 2019, that is building a community to enable interoperable cancer data modeling and applications that lead to step-change improvements in cancer patient care and research.  


Author: Omkar Ratnaparkhi 

Creating Patient-Centered Care

“We see patient-centered care as the patient is in the center, fully alert, fully informed, and fully able to contribute to the information as well as what [treatment] they want to happen in their lives.” Debi Willis is a kidney cancer survivor and the CEO and Founder of PatientLink and MyLinks. The phrase “patient-centered care” is frequently mentioned, but what do these words really mean? According to Debi, patient-centered care is sometimes mistakenly interpreted as having multiple medical professionals focusing on a single patient where the patient has little understanding nor input in decisions that are made. Instead, “patient-centered care” should involve the patient in all decision making and ensure that the patient understands all decisions that are made throughout the care process.

In the early 90s, Debi worked at the Federal Reserve Bank of Kansas City as a software engineer. She noticed that the financial sector was highly automated, but the healthcare industry was almost completely reliant on manual entry of data. Medical providers who switched to using EHR (Electronic Health Record) systems found them tedious and difficult to use. To explore the new field, Debi switched from the banking technology industry to medical technology and created software that would allow patients to easily send their information into their physician’s medical record as structured data. This allowed the physician to focus on their patient instead of typing into the EHR. Although it wasn’t in her initial plans, the demand for her technology from medical providers led her to launch PatientLink.

In 2011, Debi was diagnosed with kidney cancer. After years of not feeling well and being told by multiple doctors that she was fine, Debi felt as though her medical providers had given up on her. Finally, a nurse practitioner decided to do a sonogram and found out that Debi had kidney cancer. Immediately following her diagnosis, Debi had many thoughts running through her mind: solemn thoughts, “I want to know—am I going to die?” but also, more productive thoughts, “I wanted to understand what research experts are finding around kidney cancer and other cancers that have impacted my family.” Debi had hundreds of questions for doctors, patients, survivors, and researchers, but no way to get the answers she wanted. According to Debi, many who are diagnosed with cancer appreciate each day that they live more than they did before their diagnosis. Debi’s family had a history of cancer with her sister and two uncles passing away from brain cancer, and Debi began to think, “I was given these days; what is it that I need to accomplish?”.

Debi’s diagnosis and her family’s experience with cancer led her to change the way she viewed EHR data collection and sharing. For twelve years, PatientLink took data reported by the patient and put it into the EHR, to be viewed by providers. This helped providers better understand the patient’s condition. Debi wanted to create software to allow patients to gather their data from their physicians and have it available for their own use, allowing patients to better understand their conditions and make decisions based on all the information.  MyLinks was created to make the sharing of data bi-directional; instead of only going from patient to provider, patients and providers could share data both ways. Also, MyLinks assists in making sure that the information from different providers is in one place, controlled by each patient, and conforms to FHIR standards. Debi also wanted to have an easy platform for patients to find and enroll in clinical trials. Clinical trial matching, enrollment, and data sharing is an important part of MyLinks. Now that patients have all their data, they are empowered to use their data to improve and prolong their lives.

Patient-Provider Communication for the Elderly and their Caretakers

Sharon Hensley Alford is the Co-founder and Chief Information Officer of Cancer Insights. After her sister was diagnosed with metastatic breast cancer at the age of 29, Sharon decided to do her PhD in breast cancer epidemiology. Sharon’s sister experienced poor communication and a lack of trust with her first doctor. This, in part, made her move to a larger more established healthcare organization. Through her work as a patient advocate and her sister’s experience, Sharon realized a common trend, “When patients are not in an integrated delivery system and dealing with docs who are in silos, it makes that care coordination [and] information sharing not only with the patient but between clinicians difficult.” Patients who need access to doctors outside of their primary care network experience gaps in communication that have the potential to deteriorate the quality of care they receive.

For Natalia Johnson, a caretaker for her late father who was diagnosed with stage 4 cancer of the head and neck in April 2018, communication between her father and his providers was challenging.  Unfortunately, Natalia’s father passed away in August of 2019. During her father’s final months, Natalia used her time off during maternity leave to help her mother take care of her father. Natalia’s sister was also able to help because she worked part time. Natalia and her family made sure that when her father had an appointment, there would always be someone available to take him to the doctor’s office. After being diagnosed, some of the doctors— a special dentist, ENT, and gastroenterologist—were out of the healthcare network that he normally visited and communication became more challenging, “It makes it really hard for the patient—let alone the family—to communicate with the doctors outside of those who usually see him.” Aside from her father’s primary oncologist and a few other doctors, many doctors needed to be told verbally by her father and family of recent developments in her father’s health record before and during each appointment. “We wish there was a system in which you could look up the patient and see all of the health history instead of each time we have to go and reexplain things from top to bottom on what has happened so far.” Elderly patients have an especially difficult time, “For patients who don’t have a family to help them—keeping track of all the appointments and doctors—it’s almost impossible. There were three of us who were able to do it together. I don’t think if it were me by myself or my mom by herself, we would be able to handle it.”

Ensuring Patients are on the Same Page with their Providers

To better understand how communication can affect the patient experience I spoke with Julie Krause a patient advocate for Fight CRC and The Alliance for Clinical Trials in Oncology’s Patient Advocacy Committee. According to Julie, communication is crucial to ensuring patients are on the same page as their oncologists when making decisions about their treatment, “Some doctors say these are the pitfalls and the risks, I’m leaving the decision up to you. Other patients don’t want that type of doctor, they want a doctor to tell them what to do.” Either way, patients need to be able to make the final decision on their treatment, and patient-centered care is care that works together with the patient to come to the best solution.

Omkar Ratnaparkhi is a rising senior at Fordham University and is sharing patient stories to highlight firsthand accounts of the cancer patient experience.