Building A Team: Patient/Stakeholder –Researcher MatchingSue Sheridan, MIM, MBADirector, Patient EngagementMarch 10, 2013
Methodology Standards Associated with        Patient-Centeredness PC-1 Engage people representing the population of intere...
Video Clip: Ming Tai Seale                        3
Review Criterion 7: Team and Environment                   (Current)                                          Are the inv...
Video Clip: David Thorn                          5
Challenge Background PCORI is committed to meaningful patient, caregiver and stakeholder engagement as a tool for rigorous...
The Challenge Develop a “matching” system that can connect researchers and potential patient partners. Solution could be: ...
The Challenge Two first-place awards:   Conceptual model -- $10,000   Prototype of app -- $40,000 Winners’ work may be c...
Evaluation Criteria Technical feasibility, usability and scalability of the proposed conceptual model/prototype. Differenc...
Timeline  Submission period began: December 14, 2012  Submission period ends: April 15, 2013  Winners notified: May 15, 20...
Video Clip: Dr. Vinod Bhutani/Kris Schulze                       11
Engagement Awards:From Partnerships to ProposalsSue Sheridan, MIM, MBA
Concept origin Proposed by participants at October 2012 Transforming Patient-Centered Research patient engagement workshop...
Purpose Expedite building “community” Strengthen reciprocal relationships between researchers and non- research communitie...
Design         15
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Building A Team: Patient/Stakeholder – Researcher Matching�

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  • Narrator:LF text:Are the investigators appropriately trained and experienced to carry out the planned studies? Is the work proposed appropriate to the experience level of the principal investigator? Does the study team have complementary and integrated expertise? Is their leadership approach, governance, and organizational structure appropriate for the project? Are relevant patients and other key stakeholders of the study information appropriately involved in the design and implementation of the study?Do the experiments proposed take advantage of unique features of the scientific environment or employ useful collaborative arrangements? Is there evidence of institutional or other support?
  • “Title Slide” format
  • Workshop participants identified the need /gap for Pilot Engagement Contracts
  • Purpose is really two fold. To respond to the needs identified by workshop participants as well as to address PCORI’s need to accelerate funding of quality proposals and to “produce” Define community Define non research partner to include patients, caregivers, advocacy organizations, community members, clinicians and other stakeholders who will use the information generated by PCORI
  • Design and Available Funding PCORI expects to award a total of $1.8 million dollars annually to fund projects in three different categories—Pre-engagement/Community Building Projects, Partnership and Infrastructure Development Projects, and Proposal Development Projects—that follow a logic model and progressive “framework for success” for engagement in research.
  • Building A Team: Patient/Stakeholder – Researcher Matching�

    1. 1. Building A Team: Patient/Stakeholder –Researcher MatchingSue Sheridan, MIM, MBADirector, Patient EngagementMarch 10, 2013
    2. 2. Methodology Standards Associated with Patient-Centeredness PC-1 Engage people representing the population of interest and other relevant stakeholders in ways that are appropriate and necessary in a given research context. Stakeholders can be engaged in the processes of:  Formulating research questions;  Defining essential characteristics of study participants, comparators, and outcomes;  Identifying and selecting outcomes that the population of interest notices and cares about (e.g., survival, function, symptoms, health-related quality of life) and that inform decision making relevant to the research topic;  Monitoring study conduct and progress; and  Designing/suggesting plans for dissemination and implementation activities. 2
    3. 3. Video Clip: Ming Tai Seale 3
    4. 4. Review Criterion 7: Team and Environment (Current)  Are the investigators appropriately trained and experienced to carry outThe 8 Merit Review Criteria: the planned studies? 1. Impact of the Condition  Is the work proposed appropriate to the experience level of the principal investigator? 2. Innovation/Potential for  Does the study team have complementary and integrated expertise? Improvement  Is their leadership approach, governance, and organizational structure 3. Impact on Healthcare appropriate for the project? Performance 4. Patient-Centeredness  Are relevant patients and other key stakeholders of the study information 5. Rigorous Research Methods appropriately involved in the design and 6. Inclusiveness of Different implementation of the study? Populations  Do the experiments proposed take advantage of unique features of the 7. Team and Environment scientific environment or employ useful collaborative arrangements? 8. Efficient Use of Resources  Is there evidence of institutional or other support? 4
    5. 5. Video Clip: David Thorn 5
    6. 6. Challenge Background PCORI is committed to meaningful patient, caregiver and stakeholder engagement as a tool for rigorous research. PCORI funding announcements require patients be fully engaged throughout research process. Engagement is among the criteria PCORI uses to score applications. 6
    7. 7. The Challenge Develop a “matching” system that can connect researchers and potential patient partners. Solution could be:  A well-articulated conceptual model.  An adaptation of existing matching protocol.  A prototype or an entirely new web-based service or app.  Some combination of these approaches, or something else entirely. 7
    8. 8. The Challenge Two first-place awards:  Conceptual model -- $10,000  Prototype of app -- $40,000 Winners’ work may be considered for additional PCORI support, depending on outcome of the review process. Submission materials: slide deck (5 slides), overview doc (5 pgs), video demo (5 min), link to working app (optional) 8
    9. 9. Evaluation Criteria Technical feasibility, usability and scalability of the proposed conceptual model/prototype. Differences in ways patients, caregivers and researchers understand, describe and seek answers to problems or issues they face. Maximizing “patient-centeredness” & scientific rigor. Particular challenges of serving "hard-to-reach" audiences: ethnic & racial minorities, rural pops, the elderly, physically challenged and non- English speakers. 9
    10. 10. Timeline Submission period began: December 14, 2012 Submission period ends: April 15, 2013 Winners notified: May 15, 2013 Winners announced: at a major national health conference in the spring of 2013 10
    11. 11. Video Clip: Dr. Vinod Bhutani/Kris Schulze 11
    12. 12. Engagement Awards:From Partnerships to ProposalsSue Sheridan, MIM, MBA
    13. 13. Concept origin Proposed by participants at October 2012 Transforming Patient-Centered Research patient engagement workshopWorkshop participants identified that few resources have been directed to non – research entities for community development, capacitybuilding, or for infrastructure development for engagement in research as partners 13
    14. 14. Purpose Expedite building “community” Strengthen reciprocal relationships between researchers and non- research communities Support capacity building, co- learning, creating research questions and the development of a sustainable infrastructure to facilitate “research done differently” Accelerate proposal submission (or re-submission) to PCORI or other PCOR related research institutes Fast track implementation 14
    15. 15. Design 15

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