FAQ: PCORI LHS Pilot Collaborative and RFA, Oct. 12, 2017 + Maturity Model

Q:  Our Foundation will submit the application with partner academic institutions.  In the budget, how should we deal with indirect costs at academic institutions that are much higher than ours?

A:  We will address this and other questions at our Office Hours call dedicated to your budget and our funding support.

Q:  Would our having institutional partners agree to lower their indirect rates be considered in-kind support as per the RFA?

A:  It could be considered a form of in-kind support but by itself would not be sufficient.

Q:  We are a patient-advocacy organization without any in-house legal support, only limited pro bono legal help.  What kind of support can you offer to PPRNs for contracts and legal services?

A:  As part of our Research change package under development, we plan to offer standard Business Associate Agreements, Data Use and Sharing Agreements, and standard IRB protocols for research & quality improvement. We will address this question in more detail in a future office hours call.

Q:  What assistance can you provide with seeking funding from additional sources?  Would you write a Letter of Support for an infrastructure grant, for example?

A:  Yes, we can write Letters of Support.  In addition, as part of the Sustainability/Business Model change package under development, as well as part of our coaching, we can help you to prepare for conversations with different stakeholders about why it is important to participate in, or support, your LHS network.

Q:  What level of detail about our budget should we include in our LOI?

A:  Details on your budget are not required at this time.  First of all, the LOI is not competitive. Every group that submits an LOI will be invited to submit an application.  Second, we have intentionally given you a limit of 3 pages for the LOI with which to address the bullets on pages 14-15 of the RFA, because we want to get a sense of your current state of maturity, how you would need to transform to become an LHS, and what gaps you wish to address with PCORI’s support, including any sustainability/funding gaps.

Q:  In the LOI, if we list outcomes we wish to measure, will we be held to them or can we flesh them out more later?

A:  No, you will not be held to them. Developing a balanced set of outcome, process and quality measures is an iterative process that is part of your network’s design over the first 9 months. By describing some of your key outcome measures now, you will give us a sense of what you want to accomplish in the next 1-2 years, as well as the scope of your network’s planned improvement efforts, which will inform us how we can better support you.

Q:  Would it be possible now to start using the PCORnet Commons as a shared workspace for our group, for document sharing and discussion threads? 

A:  Yes.  To do so you may contact Joanna Ball [ jball@geneticalliance.org ], and please also see the About page in the PCORnet Commons.

Q:  After you receive the LOIs and invite PPRNs to apply, can the PCORI LHS Pilot Community Office Hours be scheduled with an Outlook calendar invite instead of just a PCORI-wide email and posting on the PCORnet Commons?  Other calls like the PI calls come up automatically on my calendar, which helps me to remember them.

A:  We had some initial hesitation to send meeting invitations to people’s calendars, but we can talk to the PCORI Coordinating Center about it and see if we can send out Outlook invites for Office Hours schedule for Oct. 19 thru Dec. 4.  In the meantime, the Office Hours are communicated in the weekly newsletter and posted on the PCORnet LHS Communities group on the PCORnet Commons [ https://pcornetcommons.org/groups/pcornet-lhs-communities-1766526687/ ].  Or you can email us and ask: PCORnetLHSCommunity@cchmc.org.

Q:  Looking at the text description of the Maturity Model attached to the RFA, I tried to build for myself a Gantt chart in Excel to try to understand for myself where our multiple stakeholders are, for example, in the Leadership element — do we have common purpose?  Should we include our Maturity Model self-evaluation in the LOI?

A:  You may if you wish, but it is optional.  We do encourage you to think about your network’s maturity along the 6 domains.  You are definitely free to include a maturity self-assessment in your application.  If your group is selected, we will ask you to think in depth about your network’s maturity.  To help guide you, a full version of the latest Network Maturity Model is attached here.

Q:  Could you give a sense of what topics the Office Hours calls will cover thru Dec 4?

A:  We are open to your suggestions, but so far we have selected several topics:  1) the Network Maturity Model (this may be spread over a few calls); 2) Technology/Registry development; 3) Financial sustainability and business model; and 4) the LHS Pilot funding support model.  We plan to split the hour for each topic 50/50 with presentation followed by Q&A.  In addition, we are available to schedule one-on-one coaching calls with you.  That said, we want to leverage our Office Hours as much as possible.  People are encouraged to call and listen in even if they don’t have any specific questions.

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