Partnership to Improve Patient Care

Over the last two years, legislation has provided an influx of new funds to support the generation of more comparative effectiveness research (CER), as well as the infrastructure to sustain this research. The Patient Protection and Affordable Care Act of 2010 (PPACA) established the Patient Centered Outcomes Research Institute (PCORI), a nonprofit corporation charged with identifying research priorities, developing a research project agenda, and executing research to better inform patients and physicians on their treatment choices.

As PCORI works to develop programs and procedures for CER, PIPC welcomes the opportunity to provide input and recommendations on that process. To that end, please continue to visit our PCORI Resources page below for updates on events, meetings and comments from PIPC on activities related to PCORI.

Resources

Building a Patient-Centered Research Program
PIPC Recommendations for the PCORI Board of Governors Meeting Washington, DC
July 18-19, 2011

PIPC appreciates the steps the Patient Centered Outcomes Research Institute (PCORI) has taken over the past few months to provide more open, transparent operations and reach out to various stakeholders.  PIPC is recommending several additional steps PCORI should take to convey its commitment to patient-centered outcomes research, and strengthen its operations. These steps will ultimately help to increase the patient and provider community's confidence and trust in PCORI’s work. 

Definition of Patient-Centered Outcomes Research

An updated, “working definition” of patient-centered outcomes research (PCOR) was presented at the May PCORI Board meeting in New York City. PIPC was pleased to learn that PCORI intends to formally call for public comments on a draft definition. As PCORI moves forward in finalizing the definition, PIPC believes the definition should be improved in several key ways:

• Clearly state a focus on needs of patients, their caregivers and providers: The current definition describes PCOR as oriented towards helping "people" in general, rather than clearly focusing on patients. PIPC believes the definition should define PCOR as research that is “intended to help patients make informed healthcare decisions” and is “responsive to the expressed needs and preferences of patients and their care providers.”  This will help ensure the research conducted by PCORI meets the needs of patients, physicians and other caregivers and providers.
• Consistently focus on clinical effectiveness and health outcomes: PIPC is concerned about language that includes consideration of "burden to individuals, resources and other stakeholder perspectives" in the draft definition, which would expand PCORI's mandate to include cost-based research. This language should be dropped in order to align the definition with PCORI's research mandate as defined in the Affordable Care Act, which calls for the Institute to examine comparative clinical effectiveness and health outcomes. 

PCORI Procedures

PIPC urges PCORI to continue improving its procedures, including making Board materials available to attendees, soliciting public input on key program decisions, and explaining how comments were considered in final policies. 

PIPC appreciates that PCORI has committed to formally publishing for public comment the definition of patient-centered outcomes research.  By doing so, PCORI has communicated to its stakeholders that the Board wants to consider their views, which is a key component of building public trust in PCORI’s work. 

However, in order to be meaningful to the patient and provider communities, this process needs to be formal and concrete.  PCORI should clearly inform stakeholders of the process for public input, and when to expect a response to the input received during the comment period.

Helpful Links

PIPC Letter on PCORI Definitions

PIPC is pleased that PCORI has released four draft definitions of “patient-centered outcomes research” early in the process of their development. The definition of this term is a very important issue for our members, and is foundational to PCORI’s work. Therefore, in response to the Board’s verbal requests for comments, PIPC would like to take this opportunity to articulate some basic principles that we hope can guide the definition of the term. 

PCORI Website

For more information on the Patient-Centered Outcomes Research Institute (PCORI) please click here.