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Opening a Pipeline to Patient-Centered Research Proposals December 3, 2014 Webinar/Teleconference 1 Opening a Pipeline to Patient-Centered Research Proposals Agenda 1:00 1:10 pm Welcome and Introductions Origins of the Pipeline to


  1. Opening a Pipeline to Patient-Centered Research Proposals December 3, 2014 Webinar/Teleconference 1 Opening a Pipeline to Patient-Centered Research Proposals

  2. Agenda 1:00 – 1:10 pm Welcome and Introductions Origins of the Pipeline to Proposal Initiative 1:10 – 1:15 pm Overview of the Pipeline to Proposals Awards 1:15 – 1:25 pm How to Submit an LOI 1:25 – 1:30 pm How to Submit an Application 1:30 – 1:45 pm Live Q&A Ask a question via the 1:45 – 2:00 pm chat function .

  3. Webinar Learning Objectives To inform patients, caregivers, and other stakeholders of the Pipeline to Proposals Awards opportunity, particularly the Tier I awards; To train potential applicants on how to apply for Tier I funding, and address relevant questions; and To inform the public on other ways to get involved with PCORI including the Engagement Awards, merit review and Advisory Panels Opening a Pipeline to Patient-Centered Research Proposals 3

  4. PCORI was Created in the Affordable Care Act, 2010 “The purpose of the Institute is to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis...and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services...” — from Patient Protection and Affordable Care Act

  5. By Statute, PCORI funds “Comparative Clinical Effectiveness Research” Compares two or more options — for screening, diagnosis, treatment Considers the range of clinical outcomes relevant to patients Conducted in real world populations and settings Attends to differences in effectiveness and preferences across patient subgroups Often requires randomized trial design Does not include cost-effectiveness analysis

  6. PCORI Mission PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. Pictured: PCORI Board of Governors 6

  7. We Emphasize Engagement as a Path to Practical, Useful Research 10

  8. Pipeline Origin Proposed by participants at October 2012 Transforming Patient- Centered Research patient engagement workshop Workshop participants identified that few resources have been directed to non-research entities for community development, capacity building, or for infrastructure development for engagement in research as partners Opening a Pipeline to Patient-Centered Research Proposals 8

  9. The Purpose/Mission of the Pipelines: Helping communities… And Finally This To Get From This To This Then This Build strong partnerships Develop between Create a high- research Funded researchers, quality PCORI partnerships research that research patients, and among unlikely results in other proposal with candidates to desired health a strong stakeholders identify health outcomes for to create a engagement issues that patients in their plan that leads PCOR/CER affect their community question to to… community address a health issue 9

  10. P2P Awards Strengthen the PCORI Research Enterprise . PCORI Research Process Implement Pre-planning Disseminate Study Results Plan Study Conduct Study Study Results 1) P2P helps foster capacity building 2) It has been shown that when for PCOR in the community before a patient partners are engaged early study plan is even developed. This on and throughout the research enables underserved/minority and process, they are more likely to help otherwise “missing” communities to in the implementation and actively engage in the research dissemination of study results in their process communities Opening a Pipeline to Patient-Centered Research Proposals 10

  11. The Pipeline to Proposal Initiative is Three-Tiered Award System Researchers who unsuccessfully submitted a PFA and need to improve proposal Tier I Tier II Tier III Up to $15,000 Up to $25,000 Up to $50,000 PCORI Funding Announcement Up to 9-month Up to 12-month Up to 12-month term term term Or submissions to other PCOR/CER Funders Opening a Pipeline to Patient-Centered Research Proposals 11

  12. The Three Award Tiers The three award tiers build on each other, with each successive step incrementally growing the community, increasing the levels of patient and stakeholder engagement, and strengthening the capacity to conduct patient-centered research. Tier III Develop and submit a patient- centered research proposal with equal participation from patients, stakeholders, and Tier II researchers Tier I Mature partnerships, Build relationships, develop research develop infrastructure, infrastructure, and and create channels define research for communication questions and priorities Opening a Pipeline to Patient-Centered Research Proposals 12

  13. Regional Breakdown for Pipeline Awards Opening a Pipeline to Patient-Centered Research Proposals 13

  14. Pipeline Award Program Offices (PAPOs) PAPOs will assist in the administration and management of the Pipeline to Proposal Awards. Because PCORI has a limited headquarters workforce, the operational, programmatic, and fiscal duties associated with Pipeline Awards will be subcontracted to PAPOs. The selected organizations all have public health, healthcare, or research familiarity, research, capacity-building, and award management experience. Opening a Pipeline to Patient-Centered Research Proposals 14

  15. P2P Infrastructure Pipeline to Proposal Award Offices PCORI PAPO PAPO PAPO National PAPO The National PAPO works on nationwide (Northeast) projects PAPO (West) (Midwest) (South) Tier I, Cycle 1 30 Pilot Phase with only the West PAPO, CHPHE Awardees Program Start Date: February 2014 Tier I, Cycle 2 10 10 10 10 10 Nationwide Rollout Awardees Awardees Awardees Awardees Awardees Program Start Date: May 2015 Opening a Pipeline to Patient-Centered Research Proposals 15

  16. Proposed Award Activities in Tier I The ultimate goal of a Tier I Award is to form a team of patients and researchers (other non-researcher stakeholders are also encouraged) who are focused on a common health issue and to demonstrate a commitment eventually to develop a patient-centered research proposal. In Tier I, Awardees will: Build relationships with other patients, researchers, or stakeholders who are focused on the same health issue. Activities may include holding workshops, conferences, and meetings. Create a communication plan to help connect community members. Activities may include setting up a website with an inbox for receiving messages. Develop a governance or guidance structure such as an advisory council for making strategic decisions. Activities may include drafting a strategic plan or forming an advisory board Complete PCORI Awardee training, which will include information about how to engage patients and stakeholders in research projects Opening a Pipeline to Patient-Centered Research Proposals 16

  17. PCORI Does Not Fund Pipeline to Proposal Projects That…. Study cost-effectiveness Study causes of disease Do not measure patient-centered outcomes Do not compare approaches to improving patient-centered outcomes 17

  18. When to Apply for a Tier I Award The graphic below shows the important dates for the Tier I Award program. LOI Last day Projected to submit portal start date proposal opens ??/??/13 3/31/15 5/1/15 12/23/14 2/16/15 11/15/13 3/31/15 5/1/15 11/24/14 12/23/14 2/16/15 ??/??/13 11/15/13 LOI Portal Awards Closes announced and Application portal opens Opening a Pipeline to Patient-Centered Research Proposals 18

  19. Submitting an LOI 19 Opening a Pipeline to Patient-Centered Research Proposals

  20. LOI Introduction To apply for funding through the Pipeline to Proposal Awards program, you must register and have an account in the PCORI Pipeline to Proposal Awards Online Application System. Follow the instructions below to do this. If you experience technical difficulties using the PCORI Pipeline to Proposal Awards Online Application System, please contact us at p2p@pcori.org. Please note the following before you begin:  You must register in the PCORI Pipeline to Proposal Awards Online Application System regardless of whether you have applied for PCORI funding in the past.  Remember to save your work before closing the browser window or your work will be lost. To save your work, click the “Save Draft” button at the bottom of the Letter of Inquiry (LOI) form. Opening a Pipeline to Patient-Centered Research Proposals 20

  21. Step 1: Register and Create an Account Go to the PCORI Pipeline to Proposal Awards Online Application System. • Complete the “User Account Information” to register and create your account. All fields (aside from middle initial) are required. • Your email address will be your username. • Click the “Create Account and Continue” button. You will be taken to a landing page with LOIs that are open for your submission. Opening a Pipeline to Patient-Centered Research Proposals 21

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