Patient-Reported Outcomes for Value-Based Cancer Care
Note: This is part II of the series, “Improving Patient-Centric Measurement in Value-Based Care.”
Dr. Amy Abernethy is one of the pioneers of patient-centered cancer care.
In particular, Dr. Abernethy has championed the application of patient-reported outcomes to cancer care and helped define today’s clinical understanding of post-treatment survivorship. She wears multiple hats, including serving as an appointee to the Institute of Medicine’s (IOM) National Cancer Policy Forum and as the Chief Medical/Scientific Officer and SVP of Oncology at Flatiron Health. Last summer I had a chance to ask her for a lay definition of value-based oncology:
“Oncology is not knees and hips. It’s relatively easy to understand how you’re going to operationally improve with hip replacements. Oncology is hard. It’s complex science, complex personal lives, highly variable from individual to individual. How do you translate that into a system of improving value?
The current model du jour that’s being tested, commercially and at CMS — is looking at a number of pretty fundamental things. It’s making sure that doctors and patients — and when I say patients I also mean families — are on the same page as to what the plan’s going to be. So, [we’re talking about] care planning. It seems simple, but it’s still not a standard part of oncology care, despite the research that’s shown it reduces hospitalizations.”
If “oncology is not knees and hips,” then what’s so different about a care plan for cancer patients as compared to a care plan for someone getting their knee replaced?
For one, care plans for cancer patients need to measure different factors at different points of the treatment journey, and those factors may have different target values or ranges at different points in time, from before chemotherapy, during treatment, and into the post-treatment survivorship phase. Clinical trials and other experimental treatments come with a litany of additional biometrics, symptoms, side effects, and so forth.
Beyond the clinical components of managing a particular disease, care plans for any particular patient require contextual grounding in a very practical sense. Cancer patients, for example, are more likely than diabetics to travel to large treatment centers like MD Anderson or Dana Farber for their care. This raises the need for better data sharing, more portability, and the flexibility for numerous clinical experts to co-author and periodically update different parts of the care plan.
Moreover, different diseases (cancer in particular) come with the need for specific education, instructions, goal setting, and personalized support, all of which tend to evolve over time in a way that patients (and their care team) can understand and keep up with. So, there’s much more than measurement involved, which we’ll discuss later.
Federal efforts are driving progress
One area that holds promise for both promulgation of better outcome measures and care planning in cancer more generally is the Oncology Care Model (OCM), a CMS initiative. The OCM requires a documented care plan that contains 13 components outlined by the Institute of Medicine:
While these recommendations don’t contain many actual outcome measures, they do harbor provisions for patient engagement, collaborative goal setting between patients and doctors, and other “hooks” where patient-reported outcomes data could help drive value. And importantly, this new model is being deployed at 190 practices around the country.
As Dr. Feeley points out: “The inclusion of the care plan in the OCM does represent CMMI’s (the Center for Medicare and Medicaid Innovation) ability to adopt measures not previously vetted by the NQF and MCS in a pilot program that may set the way for more rapidly testing true outcome measures in upcoming CMMI programs.”
This warrants a quick moment of reflection: A bunch of experts just came together, decided what was important to put in every patient’s care plan, and then CMS just did it. Compared to the usual processes at the National Quality Forum (NQF), and the federal government more broadly, the speed of this approach feels unprecedented. Look at the above list again, and imagine if similar approaches for onboarding patients onto a self-management plan existed more broadly for disease management programs in areas like diabetes or hypertension, or even just primary care in general.
And this is not to take away from the NQF’s dedicated leadership — to their credit, they are continually researching and developing dozens of metrics and measure sets, and have even introduced a “measure incubator” to accelerate measures where there are significant gaps in the field.
It’s important to appreciate the substantial work and effort that has gone into getting to this stage — introducing new measures, tying them into a care plan methodology, and moving them from theory into practice (again, 190 sites). Yet, at a time where the CMMI and other federal initiatives on value-based care face an uncertain future in the new government, it’s equally important to ask whether the private sector is ready to grab the baton and drive the next phase of progress of value-based, patient-centered care planning, measure collection, and engagement.
Part I: Improving Patient-Centric Measurement in Value-Based Care: Lessons from Oncology
Part III: Innovation Isolationism: Public-Private Collaboration in Patient-Centered Cancer Care
Patchwise Labs is a creative strategy firm focused on patient-centered innovations in healthcare.
(This paper originally appeared at Corepoint Health)
