I attended a meeting recently that got me to thinking about the fact that as we revolutionize cancer research and treatment, we are also going to have to revolutionize cancer care. And that
The meeting was sponsored by a collaboration called “Turning The Tide Against Cancer.” The organizers brought together experts from a variety of disciplines ranging from insurance companies and economists to advocacy groups and highly regarded cancer specialists to discuss policy solutions to support innovation in cancer research and care. Walking in, I anticipated this was going to be another one of those sessions where we talked about funding for research, bringing research into clinical trials, and having patients get access to new drugs. But I was wrong. The discussions quickly steered into a different direction: what do we need to do to make the cancer care system work for patients?
Of course there were the continuing themes of “big data” and the impact of genomics on drug development and patient care, but a surprising amount of the discussion centered around new payment models, quality of care, and fundamental redesign of medical care to become more patient-centric. And although we talked a lot about data gathering and analysis, what stuck with me was the redesign piece. I thought the discussion around redesign would focus on personalized medicine, but we spent a lot of time on changing the fundamental structure of cancer care and payment.
How are those two linked? Did we miss our focus?
The answer? If we don’t change the way the system is working, we won’t realize the promise of personalized medicine. Seems pretty simple and straight forward until you start thinking about the implications.
Our science is moving forward at a rapid pace, in significant ways. We are learning about the human/cancer genome, we have many new drugs in the pipeline that are targeted to the abnormal genetic signatures of cancer cells, we have research reports on a regular basis about a new finding that may predict who is at higher risk of developing certain cancers, or new tests to predict whether someone has an aggressive or indolent cancer.
But if we don’t rethink the nuts and bolts of delivering the care, we won’t be able to get these remarkable tools and discoveries into the hands of patients and doctors. That in turn means we won’t be able to offer patients the benefits of the phenomenal advances we have made in cancer research and drug development. Heck, we won’t even have the tools to help develop the drugs or learn who the patients are who may benefit from the drugs or how patients respond to the drugs.
All of this means we have to figure out how transform the system. We need to be able to capture real data from real people. We need to have computer systems that talk to one another. We need to have a payment system that rewards quality-based and innovative patient care.
The list goes on, but you get the point. Being “patient centered” — which is a bit of a buzzword these days — is a call to action. The problem is that the barriers to change are substantial, and many more people and institutions pay lip service to the concept of patient centered cancer care than work to make their care truly patient-centric.
Make no mistake: this is a gargantuan task. There are formidable obstacles to overcome which will favor keeping the status quo in place. Progress will be slow and difficult, but we have to keep remembering that we really haven’t tackled the issue of assuring every cancer patient and their loved ones that they got the right treatment for their disease at the appropriate cost and at the appropriate time. Fragmentation, duplication, and lack of information and access are no longer acceptable.
So it’s no longer just about the science and the research, as important as they may be. It’s not just surgery, chemotherapy, and radiation therapy. It’s about the care delivery process and the quality of that care. Reconstructing from the ground up. Thinking about new ways to help patients. It’s about nutrition, psychological and spiritual support, and financial guidance. It’s about making certain that people who live in rural areas can get care that is up to date and accessible through care collaborations designed to serve their needs and their expectations.
Is it too much to ask that patients, their families, and caregivers have genuine assurance that they are getting the best care available? Is it too much to ask that systems be in place to assure quality care? Is it too much to ask that we have computers that actually talk to each other? Is it too much to ask that in the most difficult moment of one’s life, they have an assurance that what was done for them was appropriate?
Don’t expect easy or quick answers to this situation. It took us decades of fundamental research to get us to the place we are today with the human genome. It is probably going to take a similar amount of time to change cancer practice. And I suspect changing practice is going to be even tougher to figure out than the gene thing.
But if we don’t do it, the power of what we will have to offer patients simply won’t be there for everyone. And that is something none of us should accept.