Table 1 Stages of Patient Involvement

Initial project meeting

An initial three-hour meeting was held between the first author, who also acted as the chair, and the patient partners shortly after the recruitment process was completed.

This meeting provided an overview of the project and an opportunity for the team to get to know each other and to establish ground rules for working together.

Individuals were contacted one week prior by email.

Project development

A project meeting was held with the research team (which included our 5 patient partners, a member of the Alberta SPOR Patient Engagement Platform, and a member of the Strategic Clinical Networks™ at Alberta Health Services. Individuals were asked to assist in the development of the research question and the search terms that would be used to conduct the scoping review.

This meeting was 1.5 h in length and occurred early in the project, was chaired by the primary author and established clarity and direction for the project.

Data Collection

We began the data collection phase with a team consisting of academic researchers, graduate students and the patient partners. The patient partners completed the grey literature review.

To support the patient partners, the first and third author hosted an initial training session lasting 3 h in length, three weeks after the initial project meeting. This training discussed the purpose of a literature review, the search terms and research question, the steps we would use to conduct the scoping review, the CADTH Grey Matters tool [16], and the framework we would use to select evidence and the roles of each member of the team [17]. The meeting was informally structured to allow the session components to be developed to meet the needs of the team, provided an opportunity for dialogue and an opportunity for the team to get to know each other.

Weekly one hour team meetings were established to support the review and to provide additional support and clarity as needed to all members of the research team, including the patient partners.

It was discovered early on in the project, that using the Manafo [17] framework was challenging for the students and patient partners. A problem-solving training session was held where a number of examples were chosen and circulated to the team for review. A member of the team was asked to present a record under consideration and to illustrate how it did or did not meet the inclusion criteria. Any additional records that were not clear after this session were flagged and resolved by a third reviewer.

The data collection phase occurred over three months.

Data extraction

To facilitate the grey literature data extraction process, one of the patient partners extracted the data using a data extraction sheet developed a priori. This data was later verified by the first author.

The other patient partners not participating in data extraction were kept up to date during this phase by using a collaborative communication application called Flock.

The data extraction phase occurred over 1 month.

Interpretation of Findings

The research team, including the patient partners, students, a member of the Alberta SPOR Patient Engagement Platform, and a member of the Strategic Clinical Networks™ at Alberta Health Services were invited to a consultation meeting and given a high-level summary of the data extraction sheets.

The purpose of this two-hour consultation meeting was to gather input from stakeholders and the research team members on the preliminary findings and to provide context and thoughts to inform the potential implications from the review.

Participants were notified of both consultation meetings one week prior by email and this meeting occurred during month seven of the project.

Dissemination

To support the dissemination of these findings, the patient partners were asked if they wished to participate in the publication of the results.

The pandemic had reached its first phase of restrictions and lockdowns were ordered. Many individuals declined the offer of writing the manuscript primarily for personal reasons resulting from the pandemic but asked to be kept informed as the project progressed and future opportunities to present our findings including conferences.

One patient partner expressed interest in writing and felt this would be an adequate distraction that would keep their mind off what was happening in the world.

Writing occurred over 1 month and involved an initial meeting to discuss an outline for the manuscript followed by a back-and-forth process of reviewing and editing until the manuscript was completed.