|Full applications were due Tuesday, December 18, 2018, by 5:00 p.m. ET|
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The Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Awards support projects that encourage active integration of patients, caregivers, clinicians, and other healthcare stakeholders as integral members of the patient-centered outcomes research/clinical effectiveness research (PCOR/CER) enterprise.
PCORI envisions a future in which patient-/participant-driven research organizations play a much greater role in guiding the entire clinical and care delivery research enterprise by providing strong, accessible, and reliable patient and caregiver voices to all aspects of research activities.
Phase II PCORnet Patient-Powered Research Networks (PPRNs) can play a pivotal role in promoting this effort by joining in a network that capitalizes on the accomplishments of PPRNs in PCORnet, by continuing to develop and test innovative resources and approaches to involving patients and participants in research, and by articulating and modeling constructive roles that can be emulated by other such organizations to make clinical research more efficient, effective, and useful. The capacity of these PPRNs can be enhanced and, ultimately, shared with other similar organizations by forming a network of peer organizations and collaborating with other organizations, including data networks such as PCORnet Clinical Data Research Networks and the People-Centered Research Foundation (PCRF), to expand the reach and sustainability of patient-/participant-driven research. Two activities of this network are fundamental: elaborating the model of the patient-/participant-driven research organization and the advantages of participating in this network; and exploring ways in which such organizations can contribute to enhanced enrollment in clinical research projects by eligible organizational members and others. That is, the network must evolve so that future membership confers advantages other than significant infrastructure funding.
This opportunity is a one-time special Limited Competition Engagement Award available only to Phase II PCORnet PPRNs.
PCORI plans to award up to $4 million as part of this award.
Related Blog Post: A New Path for PCORnet's Patient-Powered Research Networks
Step 1: Learn What We Fund
The Engagement Award program supports PCORI’s Engagement Imperative—defined in our Strategic Plan—and provides a platform to increase engagement in research, that is, the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process. We expect projects selected for an Engagement Award to result in tools and resources that may be useful to other awardees for increasing patient and/or other stakeholder engagement in PCOR and CER, PCORI, and the broader PCOR community. We are committed to using and broadly sharing this information.
Step 2: Learn What We Don't Fund
Applications will be considered nonresponsive for this Engagement Award if they propose any of the following as major activities:
- Research studies including randomized controlled trials, observational studies and pragmatic clinical studies
- Projects solely intended to increase patient engagement in health care or healthcare systems rather than healthcare research
- Projects to design or test healthcare interventions
- Activities that involve the use of a drug or medical device
- Development of clinical practice guidelines or care protocols
- Projects that involve patients only as subjects (i.e., individuals enrolled into a study as participants)
- Projects designed solely to validate tools or instruments
- Projects focused solely on writing research proposals or completing grant applications
- Projects focused on social determinants of health, with no focus on patient-centered outcomes research or comparative clinical effectiveness research
- Planning for dissemination or dissemination initiatives without including PCORI-funded research or related products
- Projects without a clear focus on patient-centered outcomes research or comparative clinical effectiveness research
Step 3: Apply for an Engagement Award
Applying for a PPRN Limited Competition Engagement Award is a one-stage process. A full proposal is required at the time of submission and a Letter of Inquiry (LOI) is not needed. Specific requirements and guidance to complete a successful application are found in the full funding announcement, application guidelines, and application checklist.
Applications may be submitted only by Phase II PCORnet PPRNs.
All applicants should describe the following:
- A commitment to participating in and supporting the development of patient-/participant-driven research models that can deliver value to patients and communities. Applicant organizations should demonstrate meaningful leadership by patient/participant communities and include ongoing, reciprocal relationships with the patient/participant community focused on increasing the conduct of patient-/participant-driven research. In addition, they must explain how learnings from their organization may be useful to other organizations within the immediate network and to the larger community of patient-/participant-driven research organizations.
- Applicant organizations should clearly describe internal mechanisms (e.g., policies) that confer meaningful decision-making authority to members of their patient/participant community.
- If applicable, applicants should include examples of how the level of input, control, and/or decision-making authority has increased for patients/participants since becoming a PPRN.
- Applicants should include examples of co-production by patient/participant communities and researchers that have resulted in a more effective or efficient research process or outcome.
- Applicants should describe how they have built and maintained a bi-directional, reciprocal relationship with the patients/participants involved in their work.
- An active research portfolio
- Applicants should provide a list of all the research proposals they have helped develop and/or submit in the past two years. The list should include their role in preparing the proposal, their proposed role in the study, the funder the proposal was submitted to, and whether the proposal was funded.
- Applicants should include a list of the externally funded studies for which they served as the primary awardee or as a subcontractor in the past two years. The list should include the name of the study, the funder, the total funded amount, the applicant’s role in the project, and the status of the study.
- A demonstrated willingness to be an active participant in peer-to-peer learning activities within the network and with other, similar organizations
- Applicants should briefly describe participation in activities such as sharing tools and resources, lending expertise, exchanging lessons and best practices, and collaborating with other patient-/participant-driven research organizations.
- Applicants should describe additional activities that could be undertaken by the network and its members that could test aspects of a patient-/participant-driven model of research that could be extended to and used by patient-/participant-driven research organizations that were not PPRNs.
Applicants should propose activities that enhance the entire network’s value; reflect a coordinated strategy; and build capacity and the ability to demonstrate the efficiency, effectiveness, and/or value of patient-/participant-driven research. Projects should address the needs, as the applicant understands them, of the research enterprise, including, but not limited to, access to patient/participant partners with experience participating in, and knowledge about, the research process; assistance in efficiently identifying, recruiting, and retaining study participants; improving the patient-centeredness of the design and conduct of research studies; and increasing the uptake and impact of research results. Proposed activities must be designed to generalize to other organizations as well as serve the needs of the applicant. Projects may test new ways of operating that will enable patient-/participant-driven research to have a sustainability model that relies on a diversity of funding sources.
- Based on the needs of the research enterprise, applicants should clearly describe gaps in their competencies to measure/track impact, efficiency, or effectiveness.
- Applicants should propose activities to develop and demonstrate capabilities that will allow the PPRN to be more responsive to research enterprise needs and contribute to improving the efficiency and effectiveness of patient-/participant-driven research. The following areas are of particular interest:
- Generating a fully developed, prioritized research agenda with the patient/participant community
- Coordinating informed patient/participant input into study plans and implementation (e.g., identifying meaningful health outcomes)
- Recruiting participants for externally funded studies
- Improving the representativeness of study populations for patient/participant research efforts
- Actively disseminating research results to the patient/participant community
- Collecting, standardizing, and using patient reported outcomes
- Collaborating with large clinical data networks, such as PCRF Clinical Research Networks
- Sustaining patient/participant engagement
- Applicants should describe how they will assess their approach and contribution to improving the efficiency and effectiveness of patient-/participant-driven research. This plan should include the following:
- Collection of feedback directly from patients/participants
- Considerations of the impact of patient-/participant-driven research on the effectiveness and efficiency of the research process
- Implications for models of patient-/participant-driven research organization sustainability
- Applicants should describe how they will establish or strengthen ties to and relationships with other patient-/participant-driven research organizations and large clinical data networks, such as PCRF, to better leverage existing resources and contribute to the development of a national capacity for patient-/participant-driven research.
Proposals should be submitted by the application deadline. Proposals will be reviewed within 60 days of submission. If the proposal is awarded, a PCORI staff member will coordinate arrangements to begin contract negotiations. Typically, contract negotiations take about six weeks. To select high-quality, patient-centered projects, PCORI’s Research Infrastructure, Engagement, and Contract Management and Administration teams, as well as internal and external subject matter experts (as necessary), will review all applications.
- Program Fit
- Project Plan and Timeline
- Qualifications of the Project Lead
- Personnel and Collaborators
- Past Performance
- Budget/Cost Proposal
For additional details on the review process, click here.
(**please note that this PCORI Funding Announcement does not require an LOI and uses a revised “Non-responsive Applications” list).
- Biosketch Template
- Budget Justification Template
- Budget Template
- Project Deliverables/Milestones Template
- Project Workplan and Timeline
- Application Checklist
- Application Guidelines
- Online User Manual: Submit Full Proposal
- Frequently Asked Questions (Updated on December 12, 2018)
- Applicant Town Hall Webinar (November 6, 2018)
- Application Submission Webinar (November 15, 2018)