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Patient-Centered Outcomes Research Institute (PCORI): Research Done Differently

February 1, 2014

What is PCORI?

The Patient-Centered Outcomes Research Institute (PCORI) is a new government-supported agency that approaches medical research with a focus on the patient to improve health outcomes. Aiming to answer medical questions that are most important to patients and collecting data from “real world settings,” this differs from traditional research, which typically occurs at large academic medical centers where scientists determine the research questions and priorities to be studied.

PCORI 101 is an easy-to-follow short video that outlines the institute’s research approach and goals.

Why was PCORI formed?

Hundreds of millions of dollars are poured into traditional research each year in the United States—research that is important to advance our knowledge of health and disease—but isn’t always focused on providing patients with the specific information they need to make medical decisions. PCORI was formed to change that. Like all research, PCORI-funded projects must be scientifically rigorous and conducted ethically. But PCORI’s patient-centered approach to resolving medical questions is unique, involving consumer input at every step:

  • formulating research questions
  • setting priorities
  • planning studies
  • collecting information
  • interpreting results
  • sharing findings

PCORI research focuses on answering four common patient questions:

  • Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?
  • What are my options, and related potential benefits and harms?
  • What can I do to improve outcomes that are most important to me?
  • How can my health care providers help me make the best decisions about my health and healthcare?

How Can PCORI Research Help the HBOC Community?

Patient-Centered Outcomes Research (PCOR) is very important for the Hereditary Breast and Ovarian Cancer (HBOC) community. Individuals with BRCA mutations or other risk factors must make many important and difficult medical decisions. In the last two decades research has discovered important information about hereditary cancer risk and outcomes, but our message boards and forums are still filled with lingering questions for which we have no definitive answers, including:

  • What is the ideal age to remove my ovaries/tubes?
  • Is removing my uterus along with my ovaries and tubes beneficial, and if so, how?
  • What medical outcomes might I face after undergoing surgical menopause?
  • Will my health and quality of life be improved or harmed by taking hormone replacement after surgical menopause?
  • Is increased surveillance likely to find a cancer early enough to avoid chemotherapy?
  • Are certain treatments better for people with hereditary cancers? Is it in my best interest to avoid certain treatments?

Answers to questions like these can help people facing HBOC make informed decisions about their health care based on their personal health goals and priorities.

Government agencies such as the United States Preventive Services Task Force (USPSTF) have a strong influence on insurance coverage and patient access to preventive services. The USPSTF reviews traditional research evidence to set screening and prevention guidelines. It also considers Patient-Centered Outcomes Research information that includes people’s attitudes towards preventive medicine such as:

  • Does an increased chance of abnormal findings affect a person’s willingness to undergo more sensitive cancer screening tests such as MRI? Does the risk of increased biopsies outweigh the benefit of detecting cancer earlier and if so, for which patients?
  • Which prevention outcomes are most important to patients?
    • survival
    • avoiding chemotherapy or other debilitating treatment
    • quality of life
  • Are answers to these questions different for high-risk patients than average-risk patients?

Research on the HBOC community’s perspectives on medical services can guide agencies in setting policies that affect access to care.

How is FORCE Involved in Patient-Centered Outcomes Research?

Over the past 15 years, FORCE has organized and united the HBOC community to identify, highlight, and promote research on the health concerns and outcomes that matter to people affected by HBOC. As we have compiled the research that is known about these issues, we have also identified the limits of our knowledge. Through our forums, programs, and surveys we have collected public input on the concerns and information gaps that most impact access to care and medical decision-making. Through our collaborations and participation on task forces and guidelines panels we continue to advance research and promote policies that benefit our community.

Recently FORCE’s collaboration with researchers from the University of South Florida and the Michigan Department of Community Health received a funding award from PCORI that will enable a “patient-powered research network” called the American BRCA Outcomes and Utilization of Testing (ABOUT) Network. Our collaboration is one of 29 networks that were recently approved to participate in a new national resource through PCORI known as the National Patient-Centered Clinical Research Network (PCORnet). We were chosen primarily due to our commitment to gathering patient input and identifying important concerns, our work to unite the community, our dedication to sharing important research results back to the community, and our efforts to train and prepare community members who have no scientific background to provide input into research.

Over the next 18 months we will be engaging our members in the following ways:

  • recruiting members who are interested in completing advocacy training and participating in leadership roles to help us build the governance of the ABOUT Network.
  • soliciting community input to identify and prioritize important unanswered research questions
  • offering opportunities for people to enroll in the ABOUT Network to help accelerate Patient-Centered Outcomes Research
  • training people with no scientific background to participate in research advocacy through our FORCE Research Advocacy Training (FRAT) program. FRAT helps to prepare members of our community to become involved in all levels of research planning and implementation.

FORCE’s participation in the ABOUT Network will allow HBOC stakeholders a place at the table and an unprecedented voice in guiding PCOR research over the coming years. Stay tuned for more details soon.

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3 Comments

  1. Dan says:

    Please touch base with me. I am an advisory panel member for PCORI and have a spouse who has a BRCA variation.

  2. […] uses her blog to advocate for research and treatment initiatives that support long-term health for women with the BRCA mutation, and offers thoughtful analyses of […]

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