In my recent blogpost, I discussed my participation in a Quality of Life Roundtable centered around brain tumor patients. The roundtable included healthcare professionals from institutions like the NIH/NCI and tertiary cancer hospitals, as well as patients, caregivers, and advocates. It was a richly rewarding experience, and I hope that it will inspire the allocation of grants to bring about meaningful change.
Today, I had a conversation with a former colleague who is a neurosurgeon. Our discussion revolved around the topics of interoperability, patient data access, and the problem of fragmented information. We touched upon the advancements in other countries that empower patients to have more control over their own data, as well as countries that have better systems for managing data access. During the Quality of Life meeting, I had raised concerns about data sharing, specifically regarding the separation of patient medical records, clinical trial data, and the lack of information for long-term survivors who experience recurrence.
For the majority of patients, caregivers, and families, their interactions primarily revolve around their own hospital and clinical team. They might participate in a clinical trial, where they briefly encounter a trial administrator and possibly other staff members. However, they remain unaware of what goes on behind the scenes, often receiving vague answers to important questions, such as:
- How was the trial designed?
- What data is being collected and why?
- What are the trial endpoints? (For many of us, what do endpoints refer to?)
- What tasks and tools do we need to complete?
- How does the team support us when we’re not in the hospital?
- Will we have access to the study’s results (assuming we are still alive)?
- How long does the study run?
Even if the data and tasks are clearly communicated, let’s imagine an ideal patient experience with digital access, reminders, and other helpful information. The foundations surrounding the trial and its publication are not meant for the eyes of patients and often their care teams. Furthermore, some of this data is managed within a clinical trial system, preventing patients from seeing the answers they provided in their hospital’s medical record portal.
This brings me to the aspect of Real-World Data in my previous post. Now, envision a scenario where electronic medical records (EMRs) and clinical trial data are interconnected. Patients could access information related to their participation in a clinical trial through their hospital’s portal. They would have additional information at their fingertips and hopefully realtime details like the size of the cohort, where they fit within the study’s demographics, and endpoint statistics (e.g., disease progression, overall survival, patient-reported outcomes, adverse events). Taking it a step further, by opting in, patients in the clinical trial could enable further analysis, even years later, allowing the study to request additional grant funding to examine long-term survivors using advanced technologies like germline and somatic DNA whole-genome sequencing.
- Why make patients wait for a study they are part of to be published?
At minimum let us know the study has been published that they are part of. This simple curtesy is often not extended. Alas, hospitals (in general) are not keen on sharing patient data, let alone telling patients about trials outside their institution or informing patients of a cancer registry for their specific tumor type. We have a long way to go to improve data sharing for patients to feel more empowered and active participants in clinical trial research. The glimmer of hope is the professionals I have meet agree there is a problem.