Who Gets to Define Value?

July 11, 2016
sketch of doctor and patients on a seesaw

Today's blog post is by Kim Thiboldeaux, CEO of the Cancer Support Community. This blog post was also featured this month in the Huffington Post here, and you can read more of Kim’s Huffington Post blog posts here. 

I always look forward to attending the ASCO (American Society of Clinical Oncology) Annual Meeting. This was my 20th consecutive year attending the meeting. It is perhaps the most important cancer-related meeting in the entire world, bringing together more than 30,000 oncology professionals from all over the globe to discuss new innovations and confront current challenges in the field of oncology. I was particularly enthusiastic given the theme of this year’s conference: Collective Wisdom - The Future of Patient-Centered Care and Research. With the trend finally turning towards Patient-Centered Care, I believe that it’s critically important to foster open dialogue between all parties involved in cancer care in order to identify best practices and address challenges to offering high quality, comprehensive care. But once again, I was left disappointed by the fact that many proposals and programs being discussed and even launched in the marketplace were developed with limited input from patients, at best. Honestly, I’m baffled.

Many of the conversations at the annual meeting centered around ongoing efforts to contain the cost of care which continues to rise. All of us involved in cancer care know that we will soon face a serious health care crisis if we do not find a way to manage the cost of care. However, while everyone is looking for ways to decrease cost and increase value, the definitions of value are often conflicting, depending on whom you ask. The health care industry continues to define value as the best treatment at the lowest cost. With over 10,000 participants in our Cancer Experience Registry, we at the Cancer Support Community know for a fact that the patient definition of value is much more nuanced. When asked about value, Registry respondents talk about maintaining quality of life, wanting more time with their doctor, and expecting transparency in the treatment recommendations they are receiving so they can fully understand risk and benefit scenarios including the associated cost.

I continue to be concerned about one strategy for reducing costs that is gaining greater traction: clinical pathways. The Children’s Hospital of Philadelphia defines a pathway as: “A task-oriented care plan that details essential steps in the care of patients with a specific clinical problem and describes the patients expected clinical course. The goal of clinical pathways is to standardize care, improve outcomes and reduce cost.”

I am not opposed to reducing costs, but I am opposed to reducing care. Standardized care is the polar opposite of the emerging paradigm of personalized medicine in cancer care and can also be in conflict with patient-centered care. Furthermore, the pathways that I’ve seen are better described as drug pathways rather than true clinical pathways. Once again, the patient is viewed through the myopic lens of biology and not the wider lens of humanity. Doctors are being incentivized to keep patients on pathways to reduce costs but I believe that if you incentivized actions toward comprehensive care, the patient would have better outcomes and the system would save money. Why not offer doctors a bonus for screening their patients for distress and referring a patient to support services if indicated? In Canada, “screening for and treating distress has been shown to save the health care system 20% of costs for patients receiving medical care.” What if we provided an incentive for doctors to do clinical trial education? Through CSC’s own work in providing education in this area, I have learned that adult patients who received our counseling services sought to enroll in trials at three times the national average. Without clinical trials, new drugs and treatments cannot become available to patients. Isn’t this a service that the system should encourage?

Most disconcerting though is that patients are not aware that they are being treated via a pathway. Patients want and need a clear understanding of all of the treatment options available to them so that they are making decisions and trade-offs with their eyes wide open. One idea I have proposed is that all physicians and hospitals that utilize clinical pathways should be required to have patients sign an informed consent form just as they do before participating in a clinical trial as required by the FDA. Patients have a right to know which treatment options are on the pathway and which aren’t, and what that means to them in terms of access and cost. Transparency is the foundation of trust between the patient and doctor, and is a critical component of patient-centered care.

It is impossible to overemphasize just how high the stakes are. Enormous amounts of money are spent every year in efforts to care for patients with cancer, bring new drugs to market and definitively diagnosis patients who are literally fighting for their lives. All of us at the Cancer Support Community will continue to work tirelessly to ensure that the patient is consulted, respected and regarded as key to the decision-making process at every step: from drug and diagnostic technology development to treatment delivery and beyond. While the system cannot be run into bankruptcy, it must never lose sight of its mission: to serve with care and compassion the patients who have been diagnosed with this life threatening disease.

See Kim's blog in the Huffington Post here.