Patient-Powered Research Networks (PPRN): Improving Infrastructure for Conducting Patient-Centered Outcomes Research (PCOR)

CLOSED

Letter of Intent Deadline:

June 19, 2013 at 5:00 p.m. ET

Summary:

The goal of PCORI’s National Patient-Centered Clinical Research Network Program is to improve the nation’s capacity to conduct comparative effectiveness research (CER) efficiently, by creating a large, highly representative electronic data infrastructure for conducting clinical outcomes research. Specifically, this program will promote a more comprehensive, complete, longitudinal data infrastructure; broader participation of patients, clinicians, health systems, and payers in the research proccess; and improvements in analytic methods for both observational and experimental CER. Through this funding announcement, PCORI seeks to support new or existing Patient-Powered Research Networks (PPRN) that are comprised of patients and/or caregivers who are motivated to build an ideal network and play an active role in patient-centered comparative effectiveness research (CER).

Funding Announcement:

The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRN)—Phase One

*Key Dates:

Online System Opens

May 15, 2013

Applicant Town Hall Session

Sept. 4, 2013 at 12:00 pm ET

Register Here

Letter of Intent (LOI) Due

June 19, 2013

Application Deadline

September 27, 2013

Merit Review Dates

October-November 2013

Awards Announced

December 2013

Earliest Start Date

January 2014

Maximum Budget:

$1 Million total costs/project

Maximum Project Period:

18 Months

Funds Available Up To:

$12 Million

Eligibility:

Applications may be submitted by:

  • US-based network, group or organization of patients (either with a physical or virtual presence) of any size that has as a central goal of the establishment and growth of an activated cadre of individuals to provide their own patient-reported data for PCOR.
  • Networks or groups, similar to that described above, that have been developed in part through the efforts of clinicians, researchers or delivery systems to participate in comparative effectiveness research, including randomized clinical trials.
  • Networks or groups of patients that have been convened through the efforts of internet-based or social media based vendors, such as online communities, groups convened to use personal health records or specifically for purposes of participating in research.
  • Existing patient registries in which member patients are active in governance of registry activities or which aim to enlist and activate patients during this Phase One.

Additional information can be found in the full announcement.

Review Criteria:
Applicants do not need to have all these in place at the application stage.

1. Description of the patient or patient/caregiver network.

2. Building a clinical database of patient-contributed data.

3. Plans for increasing the size, diversity, and representativeness of the network.

4. Plans for involving patient participants in network governance.

5. Willingness to participate in a national patient-centered clinical research network for the conduct of CER in collaboration with researchers affiliated with CDRN awardees, as well as with researchers from nonaffiliated organizations.

6. Creation of a standardized network model.

7. Ability to share data with external organizations and to implement data-sharing agreements.

8. Sufficient administrative and financial accounting structures to be able to receive, manage, and account for contract funds and experienced team members.

9. Capacity to obtain standardized Electronic Health Record (EHR) data on consenting network members.

10. Capacity to store genetic data or biomarkers, as well as apply this information for purposes of PCOR. (Note:  This is not a requirement for this Phase).

Applicant Resources

Application Guidelines and Review Criteria

Other:

*Deadlines are at 5:00 PM ET. If deadlines fall on a weekend or a federal holiday, the deadline will be the following Monday or the next day after the federal holiday.

To propose a project budget that is greater than the direct costs or maximum project period listed for a PFA, submit a request by the LOI deadline using the templates provided above.