Pilot Projects Monitoring Services

PCORI is interested in soliciting for services from a Contractor with demonstrated research capabilities to work with PCORI scientists in monitoring the progress and synthesizing ongoing learnings from these projects to inform the practice of Patient-Centered Outcomes Research and to identify potential remaining knowledge gaps.

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Selected Contractor

Awardee: AcademyHealth
Amount Awarded: $806,002

Managing the PCORI Pilot Projects

Background:

In April 2012, PCORI’s Board of Governors approved funding for 50 Pilot Projects. With the goals of identifying additional methodological knowledge gaps and informing the practice and funding of future research, PCORI sought to monitor progress and synthesize ongoing learnings from these projects with the support of a contractor.

Methods:

Project Monitoring – Monitor and report on awardee activities at six-month intervals, covering progress toward individual projects’ specific aims and evaluation of patient engagement across all projects. This will include a description of the status of patient engagement for each project, aggregated data for quantitative measures, and a summary report on the qualitative responses related to patient engagement. Manuscripts to inform the process of engaging patients in research will be developed from these reports.

Learning Network – Conduct a qualitative review of projects’ research plans to examine their primary areas of interest, study methods, and proposed products to provide the basis for a plan to convene a Learning Network. Identify themes where projects group naturally and will include specific goals and potential products for each grouping. Products will minimally consist of a final report, and optimally include a manuscript, and/or a new product such as a toolkit or decision aid.

Conceptual Model for Engagement in Research – Develop a conceptual framework that identifies the structural and process aspects of patient engagement in research. The model will also include anticipated consequences and measurable outcomes. This model is intended to help advance understanding of how best to engage patients and other community stakeholders in each stage of research, and should be suitable to help the research community assess and evaluate engagement in research.

Data Collection Instruments – Propose and refine data collection instruments to:

1. Monitor the progress of each project toward its stated aims

2. Monitor and evaluate projects’ success in engaging patients and other stakeholders in the research process using measures based on the conceptual model

Impact: This contract is intended to help inform PCORI policies on research and inform additional methodological knowledge gaps in PCOR for future study. The results, where appropriate, will be published in scholarly format; otherwise, they will be used and documented internally for institutional purposes.

Summary to Date (Updated August 2014): With PCORI direction and support, AcademyHealth has managed the creation of the PCORI Pilot Projects Learning Network (PPPLN) to facilitate peer learning and collaboration across projects and extend lessons learned within and beyond this PCOR community. As of August 2014, they have gathered and synthesized evidence about facilitators, challenges, and effects of engaging patients and stakeholders in the research process from the PPPLN.

Activities and Outputs

Facilitated Cross-Project Learning, Collaboration, and Dissemination Opportunities

• Held webinar for project researchers to informally share experiences, lessons learned, workshop challenges, and identify solutions. This led to the development of several collaborative projects involving anywhere from three to 12 projects, focusing on topics such as IRB issues unique to PCOR, effective strategies for facilitating stakeholder engagement, and using PROMIS tools to support PCOR, among others.
• Supported a workshop of over 120 researchers and stakeholder partners for a two-day meeting in March 2014. Initial individual project findings, lessons learned, and strategies for dissemination were some of the topics discussed. Collaborative groups also met to continue their work in person. For more information about this meeting, see this PCORI blog post.
• Supported an online community of resources, discussion threads, and opportunities via Basecamp and an associated bi-weekly listserv.
• Provided publication technical assistance and identified presentation and publication opportunities

Synthesized Experience from Individual Pilot Projects and the PPPLN

• Deployed a data collection tool to capture project teams’ experiences engaging patients and other stakeholders in PCOR, with a focus on the facilitators, challenges, and other lessons learned from conducting engagement in research.
• Reviewed project interim reports and reported on individual projects’ progress toward stated aims.
• Reported on overall progress of PPLN toward its goals and synthesized lessons about the process of conducting PCOR in real-world settings.

Developed Resources to Support and Further the Field of PCOR

• Conceptual Framework for Engagement in Research: Systematically scanned findings from the literature to identify existing frameworks, principles, and other organizing structures for patient engagement in research. The conceptual framework was reviewed by the Consumer Patient Researcher Roundtable (CPR) and PCORI in an iterative process. Initial results were presented at the 2013 AcademyHealth Annual Research Meeting. This evaluative framework aims to move the field toward a state of enhanced patient participation in all stages of the research enterprise.

Related Materials:

• Developing Conceptual Frameworks to Guide and Inform PCOR
• Fostering and Assessing Patient and Stakeholder Engagement in PCORI Pilot Projects-2014 ARM Panel
• The PROMIS in Putting Patients’ Waiting Room Time to Good Use
• What Do Patients and Caregivers Want in Mobile Health Apps? Ask Them
• Take as Directed (or Why Not?)
• Transforming Community-Based Research on the High Plains
• Creating a “Zone of Openness” at the Doctor’s Office
• Tablet Tool Harnesses Data from Many Patients for Individual Choices
• Listen Carefully: Helping Patients Manage Their Meds
• From Vaccine Tug-of-War to Parent-Pediatrician Dialogue
• So Much More Than a “Pair of Brown Shoes”:Triumphs of Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research
  Amanda Brodt, Christine K. Norton, Amy Kratchman, "So Much More Than a “Pair of Brown Shoes”:Triumphs of Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research," Patient Experience Journal 2(1) (Spring 2015): 43-49.
• Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned
  Laura P. Forsythe, Lauren E. Ellis, Lauren Edmundson, Raj Sabharwal, Alison Rein, Kristen Konopka, Lori Frank, "Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned," Journal of General Internal Medicine (July 2015).
• Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice
  Laura Esmail, Emily Moore, Alison Rein, "Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice," Journal of Comparative Effectiveness Research 4(2) (2015): 133-145.

Key Staff

AcademyHealth:

Alison Rein, Principal Investigator
Amanda Brodt, Senior Manager
Lauren Edmundson, Research Assistant
Laura Esmail, Senior Manager
Emily Moore, Research Assistant
Raj Sabharwal, Junior Principal Investigator

PCORI:

Jason Gerson, Associate Director, CER Methods and Infrastructure Program
Natalie Wegener, Program Coordinator

Posted: October 3, 2012; Updated: November 9, 2015