Building a National Data Infrastructure to Advance Patient-Centered Comparative Effectiveness Research

We hope you'll mark your calendar for an important PCORI roundtable discussion: Building a National Data Infrastructure to Advance Patient-Centered Comparative Effectiveness Research. When: Tuesday, April 23, 2013, 9:00-11:00 a.m. ET (Light breakfast available at 8:00 a.m.) Where: The National Press Club in Washington, D.C. RSVP: Friday, April 19, 2013, by 5:00 p.m. ET (If registration reaches the venue's capacity, registration will close before this time.)   Comparative clinical effectiveness research (CER) can play a significant role in improving the volume and quality of information available to patients, caregivers, clinicians and other healthcare stakeholders. A data-rich national infrastructure to support high-quality, efficient CER will benefit all Americans. The right infrastructure has the potential to transform research and foster a learning healthcare system that uses meaningful evidence drawn from clinical practice to improve patient outcomes. On Tuesday, April 23, PCORI will host a roundtable discussion on how to create a national data infrastructure to support high-quality patient-centered CER. The roundtable will bring together representatives from government, industry, payers, health systems, and the research and patient communities to discuss the challenges and opportunities in creating such a research infrastructure and where PCORI's investments can provide unique value. Audience members will be able to pose questions to roundtable participants toward the end of the event. A webcast will be available for those who can't attend in person. Individuals who wish to attend in person should register for the event through the PCORI website. The event agenda will be updated as roundtable participants are confirmed. ###

PCORI's Patient-Researcher Matching Challenge webinar Jan. 28

January 24, 2013

Would you like to help connect researchers and patients interested in partnering to design and conduct patient-centered comparativeness research studies? We at the Patient-Centered Outcomes Research Institute hope so. And we have a way for you to do just that.

Join us on Monday, January 28, at 12:00 pm - 1:00 pm for a webinar exploring PCORI's Patient-Researcher Matching Challenge. We announced this initiative in December with $50,000 in prize money for applicants who submit the best concept or prototype for a system connecting researchers and patient partners interested in pursuing rigorous patient-centered outcomes research. We are undertaking the challenge in collaboration with the San Francisco-based company Health 2.0. The webinar will provide an overview of the challenge and let potential applicants pose questions to me and to our Director of Communications, Bill Silberg. Our approach to research is neither traditional nor simple because it requires sustained and meaningful engagement with patients, caregivers and other stakeholders. We know many researchers are interested in adopting this approach and seek funding from us, but don't necessarily know the best or most effective way to proceed. Likewise, many patients are interested in working with researchers, but are unsure of how to make the connection that will allow them to participate. The PCORI Challenge offers an opportunity for innovators to help researchers and patients connect, and help PCORI fulfill our commitment to "research done differently" by bringing together in collaboration the many voices that represent our diverse healthcare community. Applicants may consider submitting a well-articulated conceptual model, adaptation of an existing matching protocol reimagined for the purpose outlined in this challenge, a prototype for an entirely new web-based service or app, some combination of these approaches, or something else entirely. Winners of the challenge will receive cash prizes and their work may be considered for additional PCORI support. We thank you for your continued interest in our work and encourage you to register for the webinar to learn more about this exciting approach to problem-solving.

Thank you. Sue Sheridan, MIM, MBA Director, Patient Engagement

PCORI approves 25 awards, totaling $40.7 million over three years, to fund patient-centered CER

December 18, 2012

The Patient-Centered Outcomes Research Institute (PCORI) has approved its first primary research projects. PCORI today announced the approval of 25 awards, totaling $40.7 million over three years, to fund patient-centered comparative clinical effectiveness research projects under the first four areas of its National Priorities for Research and Research Agenda.

All proposals were approved by PCORI's Board of Governors pending a business and programmatic review by PCORI staff and completion of a formal award contract.   The approved research projects, based at institutions in 17 states, resulted from PCORI's first cycle of primary research funding announcements issued May 22. PCORI received nearly 500 applications. The approved projects were selected through a competitive, multi-stage review process that incorporated patients, caregivers and other stakeholders in the evaluation of proposals. Applications were evaluated on scientific merit, engagement of patients and other stakeholders, methodological rigor and fit within PCORI's research priorities and research agenda.   The projects approved for funding include those that will study ways to improve care for people with such health problems as bacterial and viral infections, cardiovascular disease and stroke, certain cancers, chronic kidney disease, chronic pain, depression and other serious mental illness, and pediatric diabetes, as well cross-cutting proposals investigating how to improve care for people with multiple conditions. Other projects seek ways to improve patient-clinician communication, reduce selected health disparities, and improve the way healthcare systems operate.   Information on all of today's awards, including the project name, primary investigator, and research institution, is provided on the PCORI website, www.pcori.org.   For more information about PCORI funding opportunities visit www.pcori.org/funding-opportunities.   #####

About PCORI The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.

PCORI pilot program to help review and test its process for prioritizing specific research topics

September 18, 2012

The Patient-Centered Outcomes Research Institute (PCORI) aims to fund research that is guided by patients, caregivers and the broader health care community. One of the most critical parts of this guidance is in prioritizing specific research topics to be considered for funding.   PCORI began accepting Statements of Interest yesterday for participation in a pilot program to help PCORI review and test its process for prioritizing specific research topics. The pilot members will play a critical role in helping improve PCORI's process of ensuring a patient-centered approach to prioritizing specific research questions.   Once implemented, the process will lead to recommendations for topic-specific funding announcements that complement PCORI's broad Funding Announcements. Participation in the pilot will include:   Testing and piloting PCORI's proposed Process for Prioritizing Specific Research Topics over the course of three conference calls occurring on October 11, October 29, and November 5, and providing feedback to PCORI on the process. Sharing in-person their experience about the proposed PCORI process at the "PCORI Methodology Workshop for Prioritizing Specific Research Topics" that will take place in Washington, D.C., on December 5. Please note that this will be webcast. Patients and other stakeholders, including researchers and methodology experts are encouraged to submit a statement of interest. Statements of interest are due by 5:00 p.m. EDT, Monday, October 1, 2012. A maximum of 30 individuals from a variety of backgrounds and disciplines will be invited to pilot the process and attend the workshop.   More information about the Pilot Research Prioritization Process, including the Statement of Interest form, is available here. Please submit any questions to getinvolved@pcori.org.   As always, we thank you for your interest in PCORI's work and look forward to working with you to achieve our shared goal of improved patient outcomes.     About PCORI The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

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PCORI today launched its second cycle of funding requests to support $96 million

September 17, 2012 PCORI today launched its second cycle of funding requests to support $96 million in comparative clinical effectiveness research that will give patients and those who care for them the ability to make better-informed health care decisions. As with the first funding cycle, which opened in May, these PCORI Funding Announcements (PFAs) correspond to four of the five areas of focus outlined in its National Priorities for Research and Research Agenda: Assessment of Prevention, Diagnosis, and Treatment Options - for projects that address critical decisions that patients, their caregivers and clinicians face with too little information. Improving Healthcare Systems - for projects that address critical decisions that face health care systems, the patients and caregivers who rely on them, and the clinicians who work within them. Communication and Dissemination - for projects that address critical elements in the communication and dissemination process among patients, their caregivers and clinicians. Addressing Disparities - for projects that will inform the choice of strategies to eliminate disparities. Additional PFAs, addressing PCORI's fifth priority, "Accelerating Patient-Centered and Methodological Research" will be issued beginning this fall. We encourage you to review our Funding Announcements and hope you consider submitting a Letter of Intent for Cycle II. All application materials can be accessed from the Funding Opportunities section of PCORI's website. About PCORI The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org. To receive regular updates and announcements from PCORI, subscribe to our mailing list.    Patient-Centered Outcomes Research Institute | 1828 L Street, NW | Suite 900 | Washington | DC | 20036

PCORI hosts 3 workshops in Washington, DC

The Patient-Centered Outcomes Research Institute (PCORI) will host three workshops in Washington, D.C., this fall as part of its effort to engage patients and other health care stakeholders as meaningful and active partners in its efforts to build a patient-centered research community and refine its research agenda.   The workshops are designed to obtain input from patients, caregivers and other stakeholders on PCORI's draft process for generating and selecting specific research topics. Once implemented, the process will lead to topic-specific funding announcements that correspond to the five priority areas for research outlined in PCORI's National Priorities for Research and Research Agenda and complement the broad Funding Announcements that PCORI issued in May.    Each workshop is designed to encourage participation from a specific group within the health care community. Attendance will be limited, but each workshop will be accompanied by a public, interactive webcast. PCORI is prepared to support travel and related expenses of invited attendees.      Workshops:   Transforming Patient-Centered Research: Building Partnerships and Promising Models October 27-28 This workshop will focus on the patient's role and perspective in PCORI's work, and provide an opportunity for patients, caregivers, advocacy groups, researchers and other stakeholders to start working together as a community to discuss potential ideas for future research. It also will support PCORI's efforts to raise the standards in the science of patient engagement by developing promising policies for identifying research questions, reviewing funding proposals and ensuring patient participation throughout the process. Attendance is limited to 150 people; 75% of workshop invitations will be reserved for patients, caregivers and organizations representing them.    What Should PCORI Study? A Call for Topics from Patients and Stakeholders December 4 This workshop will be an opportunity to solicit recommendations for specific research topics and test PCORI's draft process for determining which could be the basis of future funding announcements. Attendance is limited to 100 individuals; 25% of invitations will be reserved for patients, caregivers and the organizations that represent them.   PCORI Research Prioritization Methods Workshop  December 5 Research methodologists, patients and stakeholders will further test the process for selecting research questions and address a number of methodological issues that will help PCORI refine the process to ensure that it addresses the needs of patients and those who care for them. Attendance will be invitation only and limited to 50 individuals due to the event's format.    More information about each workshop is available on the PCORI website.   About PCORI The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.        Patient-Centered Outcomes Research Institute | 1828 L Street, NW, | Suite 900 | Washington | DC | 20036

 

PCORI today posted for public comment landmark draft Methodology Report

July 23, 2012 The Patient-Centered Outcomes Research Institute (PCORI) today posted for public comment our landmark draft Methodology Report, which proposes standards for the conduct of patient-centered outcomes research (PCOR). The report is a significant step in guiding health care stakeholders towards the best and most appropriate methods for conducting PCOR. Comments on the draft are being accepted through an online comment and survey tool where you can answer a series of general and specific questions about the report. In addition, you may upload a document to provide any additional feedback. We see this draft report as a resource for the entire healthcare community. So we're counting on input from all healthcare stakeholders to ensure that the broadest range of perspectives possible is reflected in our efforts to improve and refine this document over time. Feedback received during the 54-day comment period, which ends at 11:59 p.m. ET on Friday, September 14, will be analyzed and potentially incorporated into a revised version of the report that the PCORI Board of Governors will review and consider for adoption at its November public meeting in Boston. The report, which identifies 60 standards for PCOR, was produced by PCORI's 17-member Methodology Committee, a panel of top research methodology experts appointed by the U.S. Government Accountability Office. Its purpose is to set universally accepted standards that ensure that the information provided to patients is based on research results that meet the highest scientific standards. We eagerly await your comments on this important document, which will serve as the foundation for research that allows patients and their clinicians to make better- informed health care decisions.   Sincerely,     Joe V. Selby, M.D., M.P.H. Executive Director Patient-Centered Outcomes Research Institute  Patient-Centered Outcomes Research Institute | 1828 L Street, NW, | Suite 900 | Washington | DC | 20036

Letter of Intent (LOI) for the first cycle of funding announcements issued by the Patient-Centered Outcomes Research Institute (PCORI)

June 11, 2012 The deadline to submit a Letter of Intent (LOI) for the first cycle of funding announcements issued by the Patient-Centered Outcomes Research Institute (PCORI) is Friday, June 15. An LOI is required for anyone who wishes to submit an application. The LOI simply must convey the intent of an organization or individual to submit a complete application by July 31. To register with PCORI and submit an LOI, please visit our online application system. To aid interested applicants, PCORI is providing a series of webinars: A webinar on June 13, from 3:00-4:30 p.m. ET, will review PCORI's Research Agenda, introduce the four funding announcements, and explain the registration and LOI process. You can register to access an archived presentation of the June 6 edition of this webinar here. AcademyHealth will host a webinar, featuring PCORI Chief Operating Officer Anne Beal, MD, MPH, on June 12, from 1:00-2:30 p.m. ET,to help the health services research community understand the intent and expectations for PCORI's first round of primary research funding. The webinar is free and open to all interested individuals. To learn more and register, click here. PCORI Board of Governors Announces Special Meeting: The PCORI Board of Governors will hold a public teleconference and webinar June 19, from noon to 1:00 p.m. ET, to consider and vote on a conflict of interest policy. The policy will set clear standards for avoiding real or perceived bias in research funding decisions, and uphold PCORI's commitment to transparency and integrity. Interested members of the public are encouraged to listen in on this teleconference and view the webinar, although no public comment period is scheduled. Please register for the event to receive detailed dial-in information. An agenda for the meeting is available here. Become a PCORI Reviewer for the PFA Applications: PCORI is seeking scientists, patients, caregivers, clinicians, and other stakeholders to review funding applications for research intended to help patients and those who care for them make better-informed healthcare decisions. Reviewers are highly valued members of the PCORI community whose work is essential to helping us support research that will be scientifically rigorous and truly patient-centered. To learn more and apply to be a reviewer, click here. As part of our effort to keep all of our stakeholders informed about our funding opportunities and other initiatives, we hope that you'll forward this announcement to your colleagues and contacts. And if you are not registered to receive regular updates from PCORI, you can subscribe here. ### About PCORI The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.