Opinion

Value: Just Ask The Patient

By Tony Coelho
November 19, 2015 at 5:00 am ET

Many people want to quantify “value” in health care. But for the ultimate beneficiary, the patient, value is more personal. That doesn’t mean we can’t get better value, it just requires us to find ways that respect patients and their diverse care needs and preferences. This was the big message I took away from a roundtable recently convened by the Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) with many leading organizations representing cancer patients.

We quickly agreed that there is no one algorithm or formula for value. As a result, our discussion focused on concrete policies that could consistently achieve outcomes that matter to patients, while recognizing those outcomes will vary considerably from one cancer patient to the next.

A few key recommendations emerged from the discussion.  First is the importance of patient engagement. The time is now to bring patients into the conversation about policies impacting patient access to care in the Medicare program and beyond. Patients share the goals articulated by policymakers to improve quality, lower costs and improve the patient experience. But, meaningful patient engagement in pursuit of these goals will require a strong commitment from policymakers – not just checking the box. Patients must be involved in the development of new models of care at the outset, and their success should be measured by their impact on patients. The Centers for Medicare and Medicaid Innovation (CMMI), which has broad authority to test Medicare and Medicaid policy, should hold contracted APM’s accountable for measurable impact from their beneficiary engagement activities, including patients and people with disabilities and their families.

A second recommendation supports shared decision-making and the care planning process.  Patients view APM’s as a critical opportunity to advance shared decision-making.  Congress recognized in statute the need for shared decision-making tools to support achieving outcomes that matter to patients as part of new APM’s. Yet there is little incentive in the payment system to use them.  Nor are they well-defined.  A care planning process that captures patient preferences and changing treatment goals over time (imagine the difference between a cancer patient’s goals at diagnosis versus at later stages) is needed to support meaningful shared decision-making between patients and their providers. In health care, there may be more than one “effective” choice, but only one that suits the patient’s quality of life considerations.  At our roundtable, I was particularly struck by a statement from one participant that there is a big difference between “surviving” and “living;” the latter being a primary goal for many struck with disease.  Patients would be eager to lead a process to identify essential elements of patient-centered care planning and shared decision-making that could be implemented and incentivized through APMs.

Third is quality measurement.  APM’s such as CMMI’s Oncology Care Model are creating the need for more patient-focused measures to assess quality and balance cost-containment incentives. Traditional quality measures often assess processes of care, and others measure clinical outcomes such as overall survival.  However, for APMs to reflect value to the patient, measures that assess patient-reported outcomes, quality of life, and patient engagement must be developed and advanced.  Cancer-focused patient organizations can and should be partners in these efforts.

Lastly, patients want transparency and accountability.  Most patients are not even aware of the transition to value-based payment and its major implications for patient care.  Try asking a Medicare patient if they are aware of a clinical pathway for their oncology care, or if they are enrolled in an accountable care organization.  I bet you’ll get a blank stare.  Until recently, development of APM’s has occurred in a black box.  Within the last year, CMMI has begun to seek external input into new models laying the framework for Medicare’s future.  Still, many questions about their significant impact on patients’ treatment choices, such as the Oncology Care Model, remain unanswered.  The majority of the communication about these initiatives occurs between payers, Medicare, and participating providers. Therefore, CMMI should adopt a more open and accountable process for developing and evaluating payment demonstrations, while directly inviting feedback from impacted patients about the potential or real impact on care delivery.

It has been big news lately that the Centers for Medicare and Medicaid Services (CMS) created the Health Care Payment and Learning Action Network (LAN) to advance new models of payment and care delivery. The payers that have the most to gain from payment reforms are a loud voice in the LAN’s work. Patients have stepped forward to advance the creation of a LAN Consumer and Patient Affinity Workgroup to ensure that APM’s serve patient needs without putting undue restrictions on access. The role of the Consumer and Patient Affinity Workgroup will be a strong indication of whether success of new payment and care delivery models is to be based on outcomes that matter to patients. Beyond this workgroup, better and more targeted methods to get patient input, such as those suggested by oncology patient groups, are needed to ensure that existing APM’s, both those in the development process and those underway, meet the bar of being patient-centered.

The approach that emerged from our forum – one that advances value for all patients while respecting differences in values among patients – is diametrically opposed to renewed calls for policy-making grounded in centralized value judgments and cost-effectiveness thresholds. Instead, achieving personalized or precision medicine requires systematic goals to achieve outcomes that matter to the individual patient, as opposed to treating “averages.” There would in fact be significant costs, both for the healthcare system and for my quality of life, if I were treated as an “average” epilepsy patient – more seizures, hospitalizations, and doctor visits, in addition to the stresses of my recovery.

Our healthcare system will never know how to measure and reward quality if we don’t ask patients what they value. Patients are ready to move towards better value, but to get there, you need to put us in the driver’s seat.

Tony Coelho is a former United States congressman from California and primary author and sponsor of the Americans with Disabilities Act. President Bill Clinton appointed Tony to serve as Chairman of the President’s Committee on Employment of People with Disabilities, a position he held from 1994 to 2001. He also served as Vice Chair of the National Task Force on Employment of Adults with Disabilities. In March 2009, Tony was named as Chairperson for the Partnership to Improve Patient Care (PIPC). In this capacity, Tony works to amplify the voice of the Partnership’s diverse members, including people with disabilities, racial and ethnic communities and the elderly, among others.

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