Frequently Asked Questions: Patient-Centered Measurement Pilots Funding Opportunity

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Frequently Asked Questions: Patient-Centered Measurement Pilots Funding Opportunity This document summarizes the most commonly-asked questions received to date about the Patient-Centered Measurement Pilots Funding Opportunity. For complete details about the funding opportunity, visit: https://aircpce.org/projects/pcm-pilots JANUARY 2018

Frequently Asked Questions About the Patient-Centered Measurement Pilots Program What is a small scale pilot project? By small scale, AIR recognizes that these projects will take place over a relatively short period of time (18 months) and with a modest the level of support. Patient-centered measurement is in its infancy. Therefore, these pilots should start small, have room to fail, yield lessons learned from the experience, and provide guidance and promising practices that could scale up at later stages. Does AIR anticipate that this funding opportunity will be offered again in subsequent years or is this a one-time opportunity? At this time AIR does not have plans for re-issuing this funding opportunity again in the future. Can pilot projects focus on families, informal caregivers, or healthcare consumers rather than just patients? Yes. As noted in the funding announcement, AIR is using the term patient as a short-hand that is inclusive of families, informal caregivers, and healthcare consumers. Does AIR prefer specific healthcare delivery settings? Is AIR open to pilots that are not situated in a particular healthcare setting? There are not any particular care settings that are of higher or lower priority. AIR is open to proposed projects in any care setting, that span care settings, or that go beyond a focus on care settings to make connections with other parts of our healthcare system. If a pilot project focuses on creating new measures, do the measures need to be fully developed and tested within the pilot time frame? AIR encourages applicants to keep the scope proposed in line with what they believe to be feasible within the context of their organization, given the 18-month project duration and available funding. AIR recognizes that the full continuum of measure development from conceptualization through testing and validation can be lengthy and resource intensive and may not be feasible within these constraints. Those pilot teams that wish to focus on measure development may choose one aspect of development in which to implement the principles. Pilots do not have to include the full range of measure testing. Likewise, there could be earlier or later stages of measure development that a team wishes to focus on. Would AIR consider pilot projects that focus around patient-reported outcome (PRO) measures, such as PROMIS? Frequently Asked Questions 1

Yes, if an applicant can demonstrate how the particular PRO-focused pilot would implement the patient-centered measurement principles. The strongest letters of intent (LOI) will emphasize how the proposed pilot addresses what patients say they need and want from measurement. How important are sustainability and scalability to the overall program goals? This program focuses on gathering lessons learned and promising practices through pilot projects because it is these lessons that will enable a wide range of stakeholders within the measurement community to engage in larger scale implementation of the principles and sustain that implementation over time. In evaluating pilot ideas, AIR is looking for teams that can identify lessons learned throughout the projects and help think ahead about sustainability and scalability. Pilot Project Expectations What is the start and end date of the required 18-month project period? AIR estimates that pilot projects will begin around June 1, 2018 and conclude 18 months later on or around November 30, 2019. If selected, could a team complete the pilot project in less than 18 months? AIR expects the funded project teams to actively participate in the pilot learning community throughout the required 18-month pilot period. What is the time commitment for the pilot learning community, and is there any travel required? Selected pilots will participate in a learning community throughout the 18-month project period. This will include monthly calls to check-in on progress and challenges. Also, pilots are required to attend quarterly virtual learning community meetings in which teams will share challenges and lessons learned. As the pilots conclude, pilot teams will share group findings. No travel will be required. AIR will facilitate learning community meetings through virtual communication. Will the cross-pilot learning community be open to organizations beyond those funded under this program? No. The learning community will be open only to grantees funded under this program. However, AIR and the funded pilot project teams will share lessons learned and best practices identified through this program in future webinars. What deliverables are required for the pilot projects? Project teams will submit quarterly narrative reports in order to discuss accomplishments, plans, challenges, and anticipated challenges and solutions. The final products produced by each team will depend on the particular focus of each pilot. Frequently Asked Questions 2

AIR does expect that teams will share interim materials and final products as part of the learning community. For example, AIR will ask teams to share their questionnaires or materials, methods and approaches, key findings, reflections on the process of patient partnerships, barriers to overcoming challenges, and observations on the impact of the project. Can pilot project teams publish their findings? AIR strongly encourages publication. However, this is not a requirement. About Patient Partnership Within the LOI, is it sufficient to identify and describe the organization that will provide access to patient partners? Do specific patients need to be named or can roles be described and the actual patient partners identified during full proposal development? All other things being equal, AIR will view as stronger those LOI applicants who have engaged patient partners from the outset. This is in keeping with the principle of co-creating patientcentered measurement in partnership with patients, including in pilot project design and approach. If an applicant is not able to name specific patient partners in the LOI, the team should describe how it plans to identify and engage with patient partners in the future, including at what stage (i.e., full proposal development, or during actual pilot). Would collaboration with patient advocacy organizations address the patient partnership requirement? Partnership can begin through collaboration with patient advocacy organizations. For these pilots, AIR requires partnerships that go beyond the organizational level, for example, engaging as partners individuals whose perspective is grounded in lived experiences as a patient, a caregiver, or a family member, and not simply as a leader of an advocacy organization. Are there any restrictions or requirements on who can be a patient partner? No; there are no restrictions. However, in keeping with the principle of measurement being cocreated with patients, AIR encourages applicants to seek out partners whose primary perspective is lived experience as a patient or caregiver. Eligibility Who is eligible to apply? Proposals may be submitted by any U.S.-based private sector organization, including: any nonprofit or for-profit organization any public sector organization, including any institution of higher education or college hospital or healthcare system any laboratory or manufacturer Frequently Asked Questions 3

any unit of local, state, or federal government For-profit organizations must agree to waive any profit or fee for services. AIR encourages cross-sector project teams and the creation of partnerships that expand the boundaries of traditional working relationships in healthcare measurement. How to Apply May we submit multiple letters of intent if we have multiple pilot project plans that address the area of interest? Yes, AIR welcomes multiple letters of intent from the same institution. Each proposed pilot project should be independent, that is, carrying out one of the proposed pilot projects would not be dependent upon receiving funding for any others proposed by the same institution. Should the LOI cover page include a comprehensive list of patient partners or will a narrative be acceptable? If an applicant s list of partners is lengthy, the list may be included on the cover page, which does not include word limits. The partnership plan section in the LOI narrative section can then refer back to that cover page list. AIR encourages applicants to share any information they can in the LOI about plans for patient partnership, including a list of all patient partners, if known. Understanding who will partner with a team and through what roles will be an important consideration in evaluating LOIs. Should a letter of support from organizational partners be submitted with the LOI? A letter of support is not required at the LOI stage. How should references be provided within the LOI? Do references count in the word limits? References can be included as footnotes. Citations do not count against the word limit. Budget Questions What information on project costs is required for the LOI? For the LOI, applicants can provide just the total estimated project cost. A line item budget is not required at the LOI stage. What types of costs that are permissible? Funds may be used for: Frequently Asked Questions 4

Personnel costs (includes project director, principal investigator, scholar or fellow; project staff; administrative staff; other staff; and fringe benefits) Other direct costs (includes office operations, communications/marketing, travel, meeting expenses, polls and surveys, equipment, project space, and other, if applicable) Purchased services (includes consultants and contracts, if applicable) Indirect costs (see indirect rate restrictions under Pilot Requirements) For reference, you may wish to consult the Robert Wood Johnson Foundation budget guidance, which AIR is following for these pilot project grants. It is available at: https://anr.rwjf.org/templates/external/bpg_standard.pdf For details on restrictions in the use of grant funds, please see Appendix 3 of the Funding Announcement. Is it permissible that the project cost span a time period of less than 18 months? No. Project teams are expected to actively participate in the pilot learning community throughout the 18-month project period. Accordingly, AIR expects that project costs will span this 18-month period, although there may be periods of more and less intense activity during that period. Does AIR require any specific level of payment for patient partners? AIR does not stipulate how much or through what mechanisms such as salaries, stipends, honoraria or fees patient partners be compensated. That should be negotiated on a case-by-case basis by each team, as would be done for any other expert or team member contributing to a project. Like all other stakeholders who add value to our healthcare system by contributing time and expertise, partners whose expertise lies in lived experience should be fairly compensated. Review Process Does AIR anticipate establishing an upper threshold for number of full proposal invitations? AIR does not have a pre-established upper limit for invitations to submit full proposals. It will be driven primarily by the quality of submissions, balanced against practical limits in how many full proposals the review committee can review. Who will review the LOIs? The PCM Pilots team, which consists of AIR staff and two patient partners, will review the LOIs. Frequently Asked Questions 5