Table 2 Patient partnership resources created by SKIP

Patient Partner Opportunity Template (see Additional File 1)

Created as a template for knowledge brokers and others, as applicable, to advertise and promote opportunities for patient partners to engage with SKIP activities. The template requests that the opportunity is described in approachable language, and that it provides all relevant information for patient partners about the available opportunity for partnership with SKIP. The template prompts those who will post the opportunity (or reach out to a specific patient partner) to provide context and key standardized details related to the opportunity and the kind of engagement requested (i.e., activity details and what to expect, project title, background about the project, how much time will it take?, what would I asked to be do?, is it suitable for a beginner?, can it be done from home?, who are my contact persons?, compensation)

Equity, Diversity and Inclusion (EDI) Based Patient Partner Application Questions

Developed to collect additional information about and from patient partners who applied to partnership opportunities at SKIP, as a way to focus on equity, diversity and inclusion in these open calls. For example, information was collected on race, gender, identity, disability, etc., and the questionnaire was worded to be inclusive, provided an explanation as to why such demographic information was being collected, and if helpful, a SKIP staff member would be available to help potential patient partners fill out the form

Compensation Guide for Patient Partners

Developed as a practical document to help patient partners understand more potential choices with respect to accepting compensation from SKIP. The document explains the difference between paying expenses and providing compensation, different options for these and estimated timeline for reimbursement or payment. Potential forms and information that may be requested are also explained

Compensation Guide for Knowledge rokers

Developed as a practical document to help SKIP’s knowledge brokers understand more about how to implement SKIP’s Compensation Guide for Patient Partners. The document explains the difference between paying expenses and providing compensation, provides some resources that may be helpful, shares a flow chart of steps related to expense and compensation payment along with information associated with each step

PCAC Member and Patient Partner Recruiting Forms

These application surveys were created the Patient Partner Advisor initially to support the recruitment of members for the PCAC and then later adapted (with input from the PCAC) for recruitment for patient partners. In addition to asking about basic personal and contact information, the surveys prompted applicants to voluntarily provide demographic data related to EDI, including age, gender identity, First Nations status, racial background, and disability status. The language in the survey was intentionally used to be inclusive of equity-seeking communities in order to encourage their participation. The survey was shared via both SimplyCast and Qualtrics and supported the creation of a PCAC with diverse representation and more diverse patient partners

Onboarding Form and Conversation Guide

Created as an intake form to collect the information required from patient partners to facilitate expense and compensation payment. Information collected includes the partnership opportunity and compensation amount, patient partner personal information (including preferred name, pronouns, address, email address), communication preferences, accessibility needs, type of compensation and frequency of payment, and other required payment information

Onboarding Slide Deck Template

This slide deck was initially created to onboard PCAC members and then was used to create a template for other partnership opportunities. The intention was to have an opportunity to orient new patient partners to SKIP, show them how their opportunity fit into SKIP’s work, and provide details on how their patient partnership opportunity would be conducted. There was also an opportunity for the patient partner to ask questions of SKIP staff during this onboarding process

Terms of Reference for Committees with Patient Partners (see Additional Files 2 & 3)

These terms of reference documents were developed to support clarify of scope, responsibilities, and structure of committees within SKIP and SKIP initiatives that involved patient partners. These documents are described in more details below pertaining to: (1) SKIP’s Patient and Caregiver Advisory Committee; and (2) SKIP’s Youth in Pain project National Advisory Group