FAQ: PCORI LHS Pilot Collaborative and RFA, Oct. 6, 2017

Q: Is it appropriate to develop industry relationships as part of the application?

A: Many different forms of sponsorship are likely to be possible.  PCORnet is considering industry partnerships, and the PCORnet Coordinating Center may be helpful in considering how to develop such partnerships effectively so that they do not compromise the core mission of the network.  While it is possible to advance sponsorship during the planning phase, sustainability will also be an important topic throughout the design phase.  PCORnet may also be able to work with pilot networks on building these relationships as part of a broader sustainability plan that fits with individual network’s goals.  Applications should, however, reflect the extent to which existing various financial relationships are being utilized to support the overall financial health and sustainability of the PPRN and/or a strategic plan to achieve financial stability with partner involvement.

Q: Can applicant’s existing data systems be integrated into one supported though CCHMC?

A: As part of phase 1, we will work closely with pilot networks to design a system that provides high value to the patients and clinicians and captures high-quality, relevant data based on the measures/outcomes selected. This will be a highly iterative process and we encourage all networks to start small, adding streams of data over time as needed.  We recognize that some networks will likely have data available in external data systems; the data Registry platform provided to network’s via this Pilot project will include the ability for Networks to transmit this data into the system as an external data source.

Q: Have other networks used multiple data sources or platforms?

A: Yes, more than one data source or platform can be used as an external data source for providing information to populate the Registry platform.  When doing this, it is important to ensure that the data are defined in ways which allow for integration.

Q: What role for the CDRNs plan in data? 

A: Each network will need to determine whether CDRN data are of sufficient latency and scope to support activities around quality measurement versus integration and use in support of individual research studies.  This will be a per-Network decision and further education around this topic will be provided for networks to consider during their planning.

Q:  Is there a template for the LOI?

A: No, there is no template needed beyond the framework presented on pages 14-15 of the RFA.

Q: Where should I submit the LOI?

A: LOIs should be submitted by 5:00pm EST on Friday, October 13th to the following email address: PCORnetLHSCommunity@cchmc.org

Q: Will feedback be provided on each individual LOI?

A: No, a subset of our larger review panel will be providing a single response to all submitted LOIs.  Our hope is to provide useful information to everyone. The more information you can provide in your LOIs about the strategic direction you would like your PPRN to take and your plan for getting there, the better the reviewers will be able to frame a response which assists your network and other networks in crafting the complete application.

Q: Does the LOI 3 page limit include references?

A: No, the content of the letter is limited to 3 pages. Additional references and/or supplemental data can be provided.

Q: Is there an opportunity to receive specific feedback on my LOI or other questions I have as I compile he complete application?

A: Yes, our team is willing to set up 1:1 calls with individual PPRNs in order to address specific questions. We anticipate that while the specifics may differ, PPRNs considering submitting applications will have similar questions, issues and struggles along the way. We will be sharing advice given and general thematic information shared during these 1:1 coaching sessions on this FAQ page so that all members of the community can share in our learning.

Q:  Do all clinical sites/partners need to be established prior to the December 5thapplication deadline?

A: It would be advantageous to have secured the interest and involvement by leaders of clinical sites prior to the final application.  However, there will also be time for site recruitment, and support for how best to do this, during phase 1.

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