Incorporating What Matters to Patients in Quality Measures: A Discussion With NPAF’s Dr. Balch

Alan Balch, PhD, chief executive officer of the National Patient Advocate Foundation

“In addition to focusing on what’s the matter with patients, we are focused on what matters to them,” says Alan Balch, PhD, chief executive officer of the National Patient Advocate Foundation (NPAF). NPAF is an organization that serves as the voice for low income patients with chronic, life threatening and debilitating diseases, particularly in their ability to afford or access quality care. When it comes to quality measures, Dr. Balch and NPAF are applying that same approach—focusing not only on the quality of a patient’s treatment paradigm, but also on what matters most to patients and how those factors inform their care and quality of life.

We caught up with Dr. Balch to ask his thoughts about the impact of quality measures on patient care, particularly in the oncology space. He’ll also be joining NPC and Discern Health on April 26 for a webinar focused on improving oncology quality measurement.

NPC: Why is quality measurement important to patients? How does it impact patient care?

Dr. Balch: If you are shifting from volume to value, then you need to pay for something, and presumably you are paying for quality. One way to determine if you are receiving quality is to measure it. If quality measures are the new coin of the realm for the payment of high quality health care, then it is critical to patients that those measurements represent what they define as quality. So if prescribers are incentivized by how they are providing care based on quality measure performance, then those measures should be representative of outcomes and/or processes that matter most to patients.

In an era of MACRA [the Medicare Access and CHIP Reauthorization Act of 2015], oncology care models, and the Center for Medicare and Medicaid Innovation (CMMI), quality measures are going to be increasingly important to achieving the Triple Aim.  Measures are not just a means to an end, but an end itself in terms of driving behavior change – what gets measured gets done.

If there are measurements that are based on patient feedback, outcomes or processes that affect patient care, then the way those measurements are designed and implemented will impact patient care. If they aren’t affecting patient care, then they are probably not the right measurements.

NPC: What do you consider to be some of the challenges with quality measurement? How do those challenges differ for oncology?

Dr. Balch: First of all, it’s a long, arduous process to develop a measure and get it both recognized and incorporated into the health care system. What that means is that we are dealing with measures that are years, if not decades, old, so these measures are based on old technology and old systems. That’s not to say that every measure is obsolete, but it’s hard to innovate in the measurement space. We’re in an era of such rapid innovation, in terms of science, medical devices, radiology, and pharmaceuticals, and now we’re innovating in the payment environment and clinical trials phases. We’re trying to pay for value but have a measure set paradigm that was established during the fee-for-service era, before we had our legs under us in precision medicine.

Quality measure sets do not really recognize or incorporate this new era of personalized medicine, so the measurement sets are not readily customizable to address the unique needs of patients. We tend to apply the same measure set to every single patient in a particular disease area, often winding up with process measures rather than outcomes measures. What we know is what matters to patients varies across patients, so if measure sets aren’t preference sensitive, then measure sets will have trouble serving as a surrogate for meaningful quality.

In oncology, patients are often experiencing multiple types of treatment as they move across their care continuum.  For example, cancer patients often experience a combination of radiation, surgery, chemotherapy, pain management, and other interactions with the health care systems on different fronts, so there is a lot to measure there. Everyone’s answer is different about their disease experience, and there is more variation in the science and treatments around oncology. You don’t want to focus quality on one aspect of patient care, and the measurements have to reflect that complexity.

NPC: Organizations such as the Centers for Medicare and Medicaid Services (CMS) and the National Quality Forum (NQF) have patient advisory councils to ensure the patient voice is included in the development of quality measures. What do patients and caregivers need to do in order to effectively engage with these groups?

Dr. Balch: It does help to have some understanding of the process. But more important, patients need to be able to articulate what matters to them. Any patient or caregiver should be able to do that as part of advocating for themselves and others.

The National Patient Advocate Foundation is a member of NQF and we work with CMS and CMMI, such as giving them feedback on measurement issues and oncology care models. Some of this feedback is based on surveys of our patient populations. These surveys are designed to shed light on what matters to patients, asking about topics such as cost, side effects and benefits across a variety of different areas, and trying to determine if there are preference sensitivities. When appropriate, we convey that feedback to various stakeholders.

NPC: Patient-reported outcome performance measures (PRO-PMs) offer a way to assess patients’ experience. How should measure developers work with patients to ensure these measures are meaningful?

Dr. Balch: We can’t just assume that the same outcome measure that is relevant to one patient is relevant to all—the measurements have to be adaptable to the individual patient.

It’s common in the patient measure space to focus on the “hospitality” factors of the patient experience, such as were you treated kindly or with respect, do you have access to your electronic health records, are you able to speak with your provider outside of the office. These are important. But things like side effects or outcomes and quality of life are what ultimately matter to patients, so ideally you would consider those inputs as well. PRO-PMs should be developed with lots of input from a variety of different patients representing different socioeconomic backgrounds, racial and ethnic backgrounds, as well as disease areas, so you don’t wind up with a one-size-fits-all approach. It’s important to align patient-reported outcomes with the types of measurement that patients say reflects what matters to them.

To hear more from Dr. Balch, be sure to register for an April 26 webinar hosted by NPC and Discern Health about oncology quality measures. Register online via NPC’s website.