Sheridan_Susan1Susan Sheridan, MBA, MIM, DHL, Director of Patient Engagement for the Patient-Centered Outcomes Research Institute (PCORI), spoke with a member of the CAMH team on July 7.

Sheridan: I became an advocate 20 years ago after two of my family members experienced significant adverse outcomes in the health care system. I have witnessed the value and power of bringing patients with “lived experience” into the dialogue about improving our system’s ability to provide outcomes that matter most to patients. In the early 2000s, I began working with a group of mothers who partnered with multiple stakeholders to improve the care of newborn babies with jaundice. Ultimately, they succeeded in raising the standard of jaundice care in the United States.

Sheridan: Payment methods can have a profound influence on the care patients receive and the outcomes they experience. It is essential that “value of care” be measured according to what is important to patients when determining the amount of payment to providers. For example, care that gives patients functional independence and less pain might be rated as high in value and lead to higher payments to providers, giving them incentives to provide more of that kind of care. In the development of new payment models, the patient community must help define which outcomes patients value most. Then “how I end up,” as one patient expressed it, becomes increasingly more important to providers.

Sheridan: Patients now have the opportunity to engage as partners in Patient-Centered Outcomes Research (PCOR), which helps determine the clinical effectiveness of treatment options that matter to patients, such as quality of life (functionality, quality of sleep, level of pain, level of independence, mood, ability to be at home, etc.). These patientcentered outcomes can be quite different from the traditional clinical outcomes determined by researchers, such as blood pressure, blood sugar, and other test results. The evidence generated by PCOR can be used to develop performance measures, payment models, joint decisionmaking tools and other health care improvement efforts that are truly patientcentered.

Sheridan: As an example, if a payment model defined “value” mainly in terms of “clinical processes,” providers would strive to adhere to those and might actually be penalized, financially, for taking the time needed to understand their patients’ goals and engaging them in joint clinical decision making. Another example with a bundled payment model may include inadvertent incentives to administer care sparingly or in a “one size fits all” manner, not taking into account the unique needs of each individual patient. Additional research and including the patient voice in designing new payment models can help prevent such potential unintended consequences.

  • Patients need to identify existing opportunities to participate in health care reform at many levels.
  • Once patients are engaged in reform dialogue, all stakeholders need to converse in lay language so that the reform dialogue is demystified and the dialogue productive.
  • We must create a reform infrastructure that ensures the patient voice can be heard. Patients, caregivers, and patient and caregiver organizations must be at every table, working in partnership with the agencies that are developing measures of value and methods of payment.
  • Patient and caregiver organizations must articulate their expectations that they will be at the table as partners and must help their affiliates and members to understand that their contribution to the APM dialogue will make a difference—to them and to patients like them.

There is limited understanding in the patient community about the nature of ongoing payment reforms and their potential effects on patients’ care and outcomes. There have been few invitations to participate meaningfully in dialogue about such reforms. The patient community must be engaged if we are to improve care and outcomes that matter to patients and create a truly patientcentered health care system.

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