Weclome to CodeX's New Patient Voices Series!
CodeX 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.
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 obtain a 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 re-explain 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, we 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.