One of the bigger pieces of the Patient Protection and Affordable Care Act (PPACA) was the idea to lower healthcare costs through comparative effectiveness research. To achieve this goal, PPACA (Section 6301 and Section 10602, Public Law 111-148), created the Patient-Centered Outcomes Research Institute (PCORI).
PCORI was created to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.
Research commissioned by PCORI aims to produce information patients and their health care providers can trust. Patients will play a major role in PCORI’s work by telling PCORI what health care outcomes they value. PCORI will make sure the results of its research are provided to patients and clinicians in ways that are responsive to their needs and interests and easy to understand. PCORI is an information resource, not a care provider. In releasing its research findings, PCORI will ensure that its research is not construed as mandates for practice guidelines or coverage recommendations.
Patient-centered outcomes research is designed to inform health care decisions by providing evidence on the effectiveness, benefits and harms of different treatment options for different patients. The evidence is generated from studies that compare drugs, medical devices, tests, surgeries or ways to deliver health care. This research recognizes that the patient’s voice should be heard in the health care decision making process. PCORI’s research will be responsive to the preferences, values and experiences of patients in making health care decisions and the impact diseases and conditions can have on daily life.
According to Anne C. Beal, M.D., M.P.H., chief operating officer of PCORI, the goal of the institute is “to provide easy-to-understand information to patients so they can make the most informed health care decisions” and to “help people decide what’s best for them in getting their desired health outcome.”
The quasi-governmental institute is partially funded through a $1-per-enrollee fee on certain insurers; the fee increases to $2 per person in 2013. It is enforced by the IRS. The new organization and its financing recently drew an attack from the Senate Republican Policy Committee. According to the committee’s blog, this fee “represents a complete turnaround from an Administration that campaigned against taxing health benefits.”
But Beal defends the levy, saying it would She said more progressive insurers see this fee as an investment into PCORI’s mission. “[Insurers] are interested in paying for the right care at the right time for the right patient–it’s not just about writing a check, but it’s also about making sure people get the best they can out of the health care system.”
Beal, the No. 2 at the new institute under Executive Director Joe Selby, comes to PCORI after leading the Aetna Foundation, the philanthropic arm of Aetna Inc. There, she emphasized three areas: preventing obesity, racial and ethnic health care equity, and integrated care. Beal says she’ll carry that experience into her new role: “Health equity is going to be one of the priority areas within [PCORI’s] research agenda.”
In December, 856 project proposals flooded the PCORI office vying for funds. By March, the burgeoning staff at PCORI will have picked approximately 40 projects to fund with $26 million in grants over two years. Those will help set the tone for PCORI’s standards of research. Consequently, Kaiser recently interviewed Beal to discuss the aim of PCORI and how the institute will lessen health disparities.
Beal explained that PCORI will fund research that will show patients what options they have for treatment and what the “outcomes” will be for a particular procedure or treatment. For example, whether one procedure has less pain or leads to longer life, or means more time off from work. This means PCORI will be able to tell patients “what the outcome is in terms of pain, what the outcome is in terms of days off from work, what the outcome is in terms of longevity.
She also explained how there is a patient representative on the Board and that for every granted reviewed by PCORI, there will be “at least three patient representatives to make sure that not only is [the proposal] an interesting question, but is it a meaningful question to the patient.”
In discussing ways PCORI will address health disparities, obesity and health care delivery systems, Beal noted that “one of the most exciting promises of PCORI is … comparing systems of care.” She noted that “being able to look at the role of the health system in achieving high quality care is important, as well as being able to do it in underserved settings, or large minority-serving settings.” Beal explained that PCORI has different priority areas and health equities are certainly one of them.
Ultimately, Beal noted how PCORI is funded through 2019 and that in 10 years she hopes that the institute will improve patient care and patient experience. She envisons PCORI becoming “a go-to place for patients and … even for their providers.” She also noted PCORI wants to be innovative, “whether it’s creating new apps, or thinking about a webpage or a YouTube channel, nothing is off the table.” She noted that publishing PCORI’s work in a journal is “not the way to get to patients,” and instead, the institute must think about how to make PCORI’s work relevant to patients.