I'm thrilled to see the ramping up of data-sharing collaborations among cancer centers. They hold promise for improving the world of cancer care for researchers, clinicians, and patients. As a physician-survivor, I want to focus on one of the many benefits to patients of those collaborations: anticipated need.
In its ideal form, anticipated need is an element of care whereby patients' potential need for a trial is foreseen and tools are in place to match those patients to trials based on their clinical and molecular characteristics. Preempting patients' needs, clinicians can readily generate a list of appropriate trial options to share with their patients who need-or are concerned about needing in the future-a new treatment plan. Already at some cancer centers, if select high-risk patients develop recurrent or progressive disease, clinicians can match them with one or more clinical trials. That's only a beginning.
I'm eager to write about this because we're nearing a time when clinicians will play an increasingly vital role in the success of data-sharing ventures. Even though I was treated too long ago to experience anticipated need myself, my perspective might help you think and talk about it.
In 2016, I began serving as a patient advocate on the Patient Advisory Council of the Oncology Research and Information Exchange Network (ORIEN). My participation has made me acutely aware that data-sharing ventures are huge, expensive, complex, and complicated by lots of moving parts. At the same time, what I've seen has strengthened my hope that they'll fulfill their promise. As with all hope, the outcome is uncertain. Success depends on high-volume patient enrollment, which depends on clinicians' support of high-quality data-sharing ventures. To that end, I'll share my story.
I was diagnosed with my second recurrence and faced a poor long-term prognosis in 1993, decades before large-scale data sharing was possible. Yet I was able to experience many of the same benefits as those offered by anticipated need thanks to unusual circumstances. To explain, let's rewind to a few months before that recurrence.
My indolent lymphoma was in remission after being treated with Promace-MOPP for stage III disease and, the following year, mini-mantle for a local recurrence. That's when The New York Times published an article describing research at Stanford using chimeric monoclonal antibodies. I was intrigued, knowing that standard therapies for another recurrence would be palliative. I also knew that bone marrow transplants for indolent lymphomas, while providing tantalizing remissions, were too new to determine whether any of those remissions would last.
As luck would have it, I'd done a summer externship in oncology at Stanford 15 years before. My preceptor was happy to connect me with Dr. David Maloney, then an oncology fellow in Dr. Ronald Levy's research lab. I'll never forget how Dr. Maloney took the time to listen to my history and discuss the trial with me, even though I wasn't eligible for the trial because I didn't have measurable disease.
Just months later, I called him with news of my recurrence. The trial had one spot left. After a week of weighing options, I boarded a plane for California. Today, 25 years and 6 courses of various therapies later, I'm in remission, marveling at how all the pieces came together: the New York Times article, my Stanford connection, and the open spot in the trial. What's not a mystery are the ways my knowing about the trial before I needed it helped me as a patient.
Increased access. I'm quite sure my local oncologist and I would not have explored trials had we not already known about the Stanford trial. Given the pace of my recurrences, we felt pressed to proceed with treatment.
Easier decision-making. My familiarity with trials as treatment options gave me advantages going into the decision-making phase. Compared to starting from scratch, the information gathering was less demanding. That mattered because I was physically and emotionally worn out from 21/2 years of dealing with cancer, and now dealing with the distress of recurrence. The weighing of options was easier and better, too, thanks to a more nuanced grasp of the advantages and disadvantages of each option.
Increased healing hope. When confronted with recurrence, already knowing about the trial put me in a hopeful starting stance. Hope tempered fear. The calmer and more rational I was, the wiser-more hopeful-my decision. Having seriously considered trials, I felt I'd left no stone unturned, which gave me confidence in my chosen path. Moving forward, that confidence helped me find hope of achieving the best possible outcome...of Wendy being the patient at the far right of the survival curves.
Decreased self-blame. My confidence that I'd made the best treatment decision also helped me find peace with the possibility-the likelihood, actually-of dying. The fact that we do research because the medical world needs better treatments shifted the blame to medicine's shortcomings. I didn't blame myself for my unfortunate situation, not even subconsciously.
Prepared me to participate in a trial. Throughout the months between the phone call with Dr. Maloney and my cancer recurrence, the Stanford trial felt like an ace in my back pocket-a feeling that helped me manage the uncertainty of my remission. On learning of my recurrence, my sense of pulling out my ace helped me deal with the shock of recurrence, make a wise decision, and then manage the stress of enrolling in a trial.
Without any doubt, my knowing about a trial option before I needed it helped me through a difficult time. Patients who choose to share their clinical and molecular data are making huge contributions to progress in cancer care. Their rewards may be huge, too, starting with decreased stress and increased hope that helps them through tough times. As you pursue your mission to provide expert and compassionate care, take heart in the promise of anticipated need.