The Affordable Care Act embraced important patient-centered principles, through the creation of the Patient-Centered Outcomes Research Institute (PCORI), and its embrace of concepts like shared decision-making in health care. The shift from a payment system based on quantity to quality could be promising – depending on how we define quality. But if the healthcare system of the future is to achieve outcomes that matter to patients, it must systematically engage patients in their own healthcare decision-making and in governance. Without this sustained commitment, the enterprise will too easily slip to one that merely rewards providers for achieving cost containment through fewer treatment or service choices for patients.
My conviction on the merits of patient engagement stems not only from my career as an advocate, but my lifetime as a patient. As a teenager, I was in a serious car accident that left me with epilepsy, and in my long battle with the disease, I have seen our healthcare system from every angle. I know the confusion a patient can feel when they do not understand their diagnosis or their treatment. I know the mental anguish of despair and depression that can often outweigh even the most severe physical symptoms. And I know the strength and positivity that can come from a sense of control and involvement, when a patient knows that they are participating and contributing to their own recovery. For the millions who live with a chronic disease, consistent and meaningful engagement is of the utmost importance and it deserves to be a priority.
Foremost among our Roundtable’s recommendations is the recognition that the transition towards new models of payment and delivery presents a unique opportunity to involve patients further in their own care. The value of alternative payment models involves more than payment; it must also encompass a definition of value for patients. In addition to clinical outcomes, two other equally important parts are the journey that the patient experiences in their treatment and the personal goals they set for recovery.
Meaningful patient engagement will require a rethinking of current processes and approaches to payment and delivery reform. There are plenty of models that, while perhaps not perfect, provide a foundation for building an infrastructure for patient engagement at HHS. The best example is provided by the Patient-Centered Outcomes Research Institute, where the very culture of research is being challenged so that research questions emanate directly from engaged patients as opposed to academia. Similarly, HHS should develop more transparent procedures that elicit input and guidance from patients to understand how to better align mandates and incentives to support patient engagement, driving health systems to change behavior and culture toward effective engagement.
While we have made progress in patient engagement at PCORI and in the Food and Drug Administration’s Patient-Focused Drug Development program, there is no consistent level of patient outreach at HHS. Therefore, the Roundtable recommended that HHS create a Coordinating Council on Patient Engagement for agencies to share their experiences in patient engagement and collaborate on best practices. The Secretary of HHS needs to be directly accountable for patient engagement throughout the agencies.
We also heard at the Roundtable that current quality measures are not always the best metrics for achieving outcomes that matter to patients. Patients must be engaged throughout the development and use of quality measures so that outcomes that matter to patients are driving value assessments. This type of patient involvement requires transparency to patients, particularly in APMs, both in the measures being used to determine quality care and the incentives being used to drive certain types of care. In the long-term, the Department should consider adding patient-centered outcome measures to the electronic infrastructure that supports health systems.
Finally, the Roundtable noted that an increase in accountability for patient engagement is required in accountable care organizations (ACOs) and other APMs. HHS could host a series of discussions between agencies and beneficiaries, including patients and people with disabilities and their families, giving them meaningful input in the development of new payment models. Furthermore, ACOs should be required to collect patient-generated health data and integrate such data into their existing workflow to help institutionalize patient input. These reforms are all necessary to ensure that value to patients is a priority, and their implementation will help integrate patient engagement into the healthcare system.
The development of APMs and patient engagement are intimately related, and we must not overlook the true purpose of healthcare: to achieve the outcomes that matter to patients. Patients should be informed about treatment options, providers should have the ability to tailor care to a patient’s personal preferences, and policies should measure success of APMs by whether beneficiaries are engaged and achieving their preferred outcomes. Personalized and precision medicine will only be achieved if we get beyond “token” efforts to bring patients into health care decision-making, and instead embraces and expands upon the existing best practices to more effectively engage and empower patients.