Org | Common People |
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Patient Privacy Rights | Adrian Gropper |
Why PCORI Was Created Patients, their families, and clinicians face a wide range of complex and often-confusing choices when it comes to health and healthcare concerns. They need trustworthy information to decide which treatment or other care option is best for them. Unfortunately, traditional health research, for all the remarkable advances it produces, hasn’t been able to answer many of the questions patients and their clinicians face daily. The Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization in Washington, DC, was authorized by Congress in 2010 to close that gap. Our mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions. To do this, we work with those healthcare stakeholders to identify critical research questions and answer them through comparative clinical effectiveness research, or CER, focusing on outcomes important to patients. We also disseminate the results in ways that members of the healthcare community will find useful. What We Do Since December 2012, we have funded hundreds of studies that compare healthcare options to learn which works best, given patients’ circumstances and preferences. As the largest public research funder that focuses primarily on CER, we issue funding announcements several times each year that call for proposals for CER projects. We include patients and other healthcare stakeholders throughout the research process, so the resulting evidence will address their most important questions and concerns. We also provide awards to encourage engagement of patients and other healthcare stakeholders in CER. In addition, as directed by our authorizing law, we fund research to develop and improve CER methods. We know methods matter when it comes to producing valid and trustworthy information that will lead to better healthcare decisions and, ultimately, improved patient outcomes. What Drives Our Work Our mandate and mission are broad and complex, but in our Strategic Plan, we outline three overarching goals: Substantially increase the quantity, quality, and timeliness of useful, trustworthy information available to support health decisions Speed the implementation and use of patient-centered outcomes research (PCOR) evidence Influence clinical and healthcare research funded by others to be more patient-centered Supporting these goals are five mutually reinforcing imperatives: Engagement: Engage patients, caregivers, and all other stakeholders in our entire research process, from topic generation to dissemination and implementation of results Methods: Develop and promote rigorous patient-centered outcomes research methods, standards, and best practices Research: Fund a comprehensive agenda of high-quality patient-centered outcomes research and evaluate its impact Dissemination: Disseminate patient-centered outcomes research to all stakeholders and support its uptake and implementation Infrastructure: Promote and facilitate the development of a sustainable infrastructure for conducting patient-centered outcomes research Underlying everything we do is a set of core values: Patient-Centeredness: Patients are our true north: we rely on patient perspectives and values to guide and improve our work. Usefulness: We focus on funding research that provides actionable answers to questions that are important to patients and the healthcare community. Transparency: We work in the open and facilitate public access to build trust, encourage participation, and promote implementation. Inclusiveness: We study broad patient populations and seek to provide evidence that is tailored to patients’ demographic or clinical characteristics and their preferences. Evidence: We consistently rely on the best available science and we evaluate our work to improve its reliability and utility. We welcome your involvement in our work, participating as a researcher or a healthcare stakeholder, either on a research team or in other PCORI activities. Posted: September 10, 2014; Updated: March 27, 2017
Org | Common People |
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Patient Privacy Rights | Adrian Gropper |