I am proud to share with you my experience as an inaugural member of the newly established Patient-Centered Outcomes Research Institute’s (PCORI) Advisory Panel on Patient Engagement. I was selected by PCORI from nearly 1,300 applicants to serve on the 21-member panel of representatives from across the healthcare community, including patients, researchers, clinicians, and representatives of industry and government. Each of us represents a uniquely diverse perspective from the health care community, and together, we join in PCORI’s mission to fund research that helps patients and those who care for them to make better-informed health and healthcare decisions to life. The panel is the first of its kind developed to ensure the highest patient engagement standards and a culture of patient-centeredness in not only PCORI’s work, but the research that it funds. The panel is charged with:

• Advising PCORI on their process for identifying research topics and priorities that are important to patients;
  Advising PCORI on their engagement of patients in the topic generation, review of applications, and standards for engagement in the research they fund;
  Advising PCORI on methods to evaluate the impact of patient engagement in research; and
  Assisting and advising PCORI on communications, outreach, and dissemination of research findings.
  Suggesting, reviewing and enhancing engagement programs and innovative initiatives

This Spring a two day event acquainted us with PCORI and its mission, national priorities for research, current patient and stakeholder engagement efforts, and the research prioritization process. Most importantly, it created a community of activated experts and advocates dedicated to the meaningful integration of the patient voice in every phase of the research process. Our panel will convene three more times during my one year term, and I look forward to representing each of your voices in my service on this panel. To learn more about ways in which you can get involved with PCORI’s work and contribute to creating a patient-centered research program, visit www.pcori.org/get-involved.
During the closing of the kickoff meeting members of the group shared that they were energized, hopeful motivated and ready to get specific and focused on making a difference to ensure that patients have the information they need to make decisions that reflect their desired health outcomes. I look forward to keeping you updated as I continue in this role on the Advisory Panel on Patient Engagement.

Perry Cohen

Perryj

It is so good to see you back posting. It has been a long time coming and I am glad to see you.

With respect Thelma

Congratulations Perryj !!!
And I checked out the budget provisions on your org. website -- wow, that is some heavy hitting ! Good news!
Bob D

PCORI Releases RFP for Coordinating Center for Data Infrastructure Initiative
PCORI logo

We're pleased to tell you that we've issued a request for proposals to establish a Coordinating Center that will support the development of a new national network to facilitate patient-centered comparative effectiveness research (CER). The deadline for proposals is Wednesday, July 31, 2013.



The Coordinating Center will provide technical and logistical support to the individual components of a new National Patient-Centered Clinical Research Network envisioned by PCORI. The goal of this initiative is to improve the nation's capacity to conduct CER efficiently and to learn from the health care experiences of millions of Americans by creating a large national network of health data representative of patients across the country. This network will promote broader participation of patients, clinicians, health systems, and payers in the research process and improvements in methods for conducting CER.



PCORI committed $68 million in April to the development of this National Patient-Centered Clinical Research Network through the creation or expansion of up to eight health system-based Clinical Data Research Networks (CDRNs) and up to 18 Patient-Powered Research Networks (PPRNs) organized by groups of patients interested in participating in clinical research.



The Coordinating Center will provide project management to the CDRN and PPRN awardees and support other components of the initiative. It will play a critical role in fostering communication and coordination among the awardees, disseminating best practices and supporting program evaluation. The full request for proposals with details on the scope of the work and evaluation criteria is available online.The awardee is expected to be announced in September.



Additional information on PCORI's vision for the Network is available from the archives of a roundtable announcing this project, a blog post from PCORI Executive Director Joe Selby, MD, MPH, and a new blog post from Rachael Fleurence, PhD, PCORI Acting Director, Accelerating PCOR Methods Program.



Please note, PCORI has made some changes and clarifications on our website and in the materials related to the CDRN Funding Announcement and PPRN Funding Announcement in response to feedback we've received. We encourage interested applicants to review the updated materials in advance of submitting their LOI.
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