Patients with rare diseases have learned what it means to be their own advocates and seek out the care that they need. This often means searching for primary and secondary opinions on their diagnosis of treatment options, which may be in another state or even country. Yet to receive care, remotely or otherwise, at another hospital would in the past have required travel on the part of the patient, which can be expensive and time-consuming for these patients for whom time is critical in their care. Now, some of the top specialty care hospitals in the country, including the Mike Shane Fund’s partner hospitals (Memorial Sloan Kettering, UCSF, University of Pennsylvania, and the Cleveland Clinic) have made care more accessible to patients across the country and the world by offering second opinions remotely. In a remote second opinion, a patient can receive a review of their case by a specialist without leaving the comfort of their home- in theory, at least. Yet what is also required, which at times requires the patient to travel and can be time-consuming as well, is the collection and delivery of the patient’s medical records to the hospital where the patient is seeking a remote second opinion.
Unfortunately, despite the requirement of EHRs, they often do not communicate with each other and many leave out certain types of records and health information such as DICOM medical images and pathology files. In many speciality cases, such as cholangiocarcinoma and other cancer cases, these pieces are essential to the full picture of the patients care, and delays in delivery and communication of this information can be the weak link in the patient receiving the high-quality care and expertise that they require and that medical professionals have the capacity to deliver.
There is a strong likelihood that this story may seem familiar to you- if not about your own healthcare, then that of a friend or family member. I have heard countless stories, from clients, friends, people I have met through the Mike Shane Fund, and my parents themselves. My dad is a primary care physician and my mother works in his office, managing the administration. They know very well how challenging it can be to get healthcare records where they need to go to support their patients. My mother, Anne, estimates that close to 12 hours of her workweek is spent finding, requesting, printing, faxing, sending, and otherwise managing their patients’ records. My father rarely gets to see medical images of the patients he refers out. Those records are on CDs, and even if he were to get those CDs, he does not have a medical image viewing platform on the computer at his practice.
The goal of the Mike Shane Memorial Fund is to bridge the gap between the patient in need of specialty care and the specialist that needs the full picture of the patient's medical history to confirm diagnosis and treatment or recommend a different course of action. It is our hope that we can fund life-saving care for those diagnosed with cholangiocarcinoma, especially those who may not have the ability to fund it themselves.
Would you like to support our mission? Learn more about donating here.
Know someone diagnosed with cholangiocarcinoma who could benefit from a remote second opinion? Learn about the application process here.