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  • Home
  • About
    • Mission and Priorities
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    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
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    • International
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    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
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      • MFN/IPI Webinar 2025
      • Discrimination & Health Care
      • C & GT Webinar
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      • Value Our Health Briefing
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
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      • Patient Empowerment Webinar
      • Value Assessments Briefing
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The PIPC Blog

PIPC Weekly Update - October 4, 2013

10/4/2013

 
1. NHC Presents Draft Usability Criteria, click here to view the NHC White Paper.
2. Blog: Clinicians and Patients as Vital Partners in the Research Process, click here toview the blog post.
3. PCORI Trust Fund Research Exempted from Government Shutdown, click here to view HHS’ contingency staffing plan.
4. Upcoming Events and Webinars, see details below.
5. Pink Sheet: Incoming Chairman Norquist Plans for PCORI to Continue Beyond 2019, click here to view the article (subscription only).
6. National Journal: Health Care's Knowledge Problem, click here to view the article.
7. Pink Sheet: PCORI Board Ponders Plan for More “Focused” Research, click here to view the article (subscription only).
1. NHC Presents Draft Usability Criteria
On Monday, September 30, 2013, the National Health Council (NHC) presented its framework for usability criteria to guide comparative clinical effectiveness research. Dr. Daniel Mullins from the University of Maryland presented his work conducted for PCORI on how to integrate patients into the research process.  Click here to view more about his work.  The attendees also were able to hear from Avelere Health and NHC on their work entitled, "Evaluating the usability of CER for Patient and Provider Decision Making."  Click here to view the White Paper.  PIPC congratulates NHC on this evolving work to ensure that research and dissemination practices result in information that can be used by the patient care team.
​
2. Blog: Clinicians and Patients as Vital Partners in the Research Process
In a guess post on The PCORI Blog, Leana Wen, MD, MSc, an emergency physician and member of PCORI’s Advisory Panel on Patient Engagement comments “PCORI is an attempt to shift the paradigm of how medical research is done. Rather than having patients as invisible, nameless subjects, PCORI requires them to be involved in the research design from the very beginning. Patients are expected to be equal partners in deciding what projects to fund and figuring out how to design studies with a patient-centered focus. […] Researchers are smart and savvy and will come up with ways to tailor their proposals to PCORI’s guidelines. PCORI needs to be similarly smart and savvy to ensure that they differentiate researchers who truly have a patient-centered mentality versus those who are just checking a box to affirm that yes, patients are involved.  Click here to view the blog post.

3. PCORI Trust Fund Research Exempted from Government Shutdown
The Department of Health and Human Servcies (HHS) contingency staffing plan for operations during the government shutdown means that 52 percent of HHS staff must take furloughs.  But according to an Department document, ”Agency for Healthcare Research and Quality (AHRQ) would continue to maintain oversight of ongoing projects funded by the Patient-Centered Outcomes Research Trust Fund (PCORTF) and would continue CMS-funded work related to measure development for the Children's Health Insurance Program Reauthorization Act.”  Click here to view HHS’ contingency staffing plan.

4. Upcoming Events and Webinars
• American Academy of Actuaries Webinar: A PCORI Overview and How to Get Involved
October 16, 2013, 12:00 - 1:00PM ET
As PCORI has begun the process of implementing its mission to help consumers make better informed decisions on their health care through the funding of patient-centered CER, the webinar will: 1) provide an overview of the PCORI’s mission, 2) explore how PCORI engages in research and includes patients and various stakeholders at each step in the process, and 3) discuss how actuaries can be more involved in this area.  Speakers will include Greg Martin, Deputy Director of Stakeholder Engagement for PCORI, and Cori Uccello of the American Academy of Actuaries. Click here for more information and to register.
• PCORI Workgroup: Clinical Interventions to Reduce Hypertension Disparities
October 18, 2013, 9:00AM - 5:00PM (ET)
PCORI’s Addressing Disparities (AD) program “is working with MillionHearts® to convene a multi-stakeholder workgroup to discuss clinical interventions to reduce hypertension disparities.  The purpose of the workgroup is to help prepare the AD program for developing a funding announcement to conduct comparative effectiveness research focusing on clinical interventions to reduce disparities in care and improve outcomes among patients with hypertension.”  Click here to register for the webinar.
• PCORI Workgroup: Perinatal Care Management and Outcomes
October 24, 2013, 9:00AM - 5:00PM (ET)
The PCORI Addressing Disparities (AD) program and Improving Healthcare Systems (IHS) program “will convene a multi-disciplinary workgroup to discuss Perinatal Care Management and Outcomes. The purpose of this meeting is to help prepare the AD and IHS programs as they explore the possibility of developing one or more funding announcements to conduct comparative effectiveness research focusing on perinatal care interventions to reduce disparities in outcomes among mothers and infants.”  Click here to register for the webinar.
• PCORI Webinar: PCORI Merit Review: Learning from Patients, Scientists and Other Stakeholders
October 30, 2013, 12:00 - 1:00PM (ET)
This PCORI webinar “will describe the process and rationale for PCORI’s unique approach to reviewing research proposals for funding, which includes patients and other healthcare stakeholders along with researchers in the review of all proposals. Additionally, survey and group interview data from past merit reviewers will be presented to identify the benefits, challenges, and opportunities for improvement related to PCORI’s approach. A panel of past patient, stakeholder, and scientist reviewers will discuss their perceptions of PCORI merit review.” Click here to register for the webinar.
• PCORI Regional Engagement Workshop: Applying Patient-Centered Outcomes Research in Racial and Ethnic Minority Communities
November 6 - 8, 2013, Albuquerque, New Mexico
PCORI will host its third Regional Engagement Workshop on November 7, 2013 in Albuquerque, New Mexico. “The Power of Partnership in Research: Applying Patient-Centered Outcomes Research in Racial and Ethnic Minority Communities will provide an opportunity for patients, researchers, and healthcare stakeholders to build relationships with like-minded individuals interested in clinical comparative effectiveness research.  We welcome patients, caregivers, and local healthcare leaders from New Mexico, Arizona, West Texas, Colorado, Nevada, and Utah to join us in building a patient-centered research community, to learn about PCORI, and guide us on how to conduct patient-centered clinical comparative effectiveness research.”  Clickhere to register for the event.

5. Pink Sheet: Incoming Chairman Norquist Plans for PCORI to Continue Beyond 2019
Gregory Twachtman of The Pink Sheet reports, “Incoming PCORI Chairman Grayson Norquist still feels ‘a sense of urgency’ to demonstrate the institute can be effective in providing research that can improve health care decision-making by patients and other stakeholders...‘I think a challenge for us is to move more quickly,’ Norquist said. ‘One of the things that we've done is spend the last several years building this organization, developing consensus on where we want to go. Now I think the challenge is to move in a more expeditious manner to do the kind of things we want to do.’” Click here to view the article (subscription only).

6. National Journal: Health Care's Knowledge Problem
In an article published in National Journal, Darius Tahir comments, “The health care law aims to prevent such medical excesses by encouraging ‘comparative effectiveness research’ a type of research intended to compare current procedures to determine best practices. But there's also a deeper problem: In some instances, as with the prostate screenings, providers know what they ought to do, but don't do it. It's not just a problem of ignorance, then; it's a problem of changing financial and cultural incentives. The Affordable Care Act attempts to tackle the former, but has to overcome the latter to do it.” Click here to view the article.

7. Pink Sheet: PCORI Board Ponders Plan for More “Focused” Research
Discussing the recent PCORI Board of Governors meeting, The Pink Sheet reports, “PCORI Chief Science Officer Bryan Luce introduced a preliminary plan for funding ‘focused’ research topics (defined by staff as identified subject areas of interest but lacking specific research questions) that might not have gone through the same rigorous process that is used to create research funding opportunities for ‘targeted’ subjects (which identify both subject and specific research questions).” Click here to view the article (subscription only).

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