• Recruiters’ characteristics and public image
• Awareness of engagement opportunities and impact
• Relationships, networks and infrastructure
The need for an environment in which the public has an awareness about engagement opportunities and the (potential) impact of patient engagement was emphasized. Furthermore, relationships, networks and infrastructure facilities such as directories could increase the success of recruitment. The recruiters’ characteristics and their public image were also noted as influential factors. Interviewees widely emphasized that the recruitment strategy should fit with the patient characteristics the team is hoping to recruit.
“One of the biggest challenges for us is the awareness of what we are trying to accomplish in the public. Typically when patients hear research recruitment they think about ´we want to recruit you so we can study you" (Patient engagement lead, Canada).
• Desire to help
• Time and resources
• Health status
• Education, skills and interest
• Experiences and perspectives
It was reported that patients who have time and an interest in the research topic were more likely to become engaged. It was also emphasised that patients bring skills, perspectives and experiences. Drop-out reasons were reported such as health issues or caregiving responsibilities, different priorities, frustration with the pace of the project and an overload of work or volunteer activities.
For example, one respondent described their strategy as follows, “....some people, especially people with mental health problems will drop out last minute and you have very little notice to deal with that. We often recruit perhaps more than you anticipate; you need to cover that scenario” (Public involvement advisor/manager, United Kingdom).
• Match between interest, skills and experiences
• Match with the lead/team
• Clear role and responsibilities
• Time commitment
• Real impact
It was widely reported that a clear description of the role, responsibilities, commitment and (potential) impact was helpful to recruit and select patients. For example, one respondent commented, “.....a key thing is about clarity. Clarity in terms of roles and responsibilities and how much people will be involved as well, I think that’s really important.” (Public Involvement advisor/manager, United Kingdom).
The importance of thinking about the perspectives, skills and experiences needed for the research project was frequently mentioned: “You want to have patients on your project that would complement your team. When I am thinking about a project, I’m thinking about researchers that I want. .... maybe I need a biostatistician ....maybe an oncologist... So I think that I would have the same approach to finding patient advisors” (Clinical Investigator, Canada).
An initial interview was recommended to ensure a good fit with the project and the team. It was also suggested to start thinking about recruitment in very early stages as it takes time to recruit and select patient partners.
• Recognition and compensation
• Shared decision making
• Communication and follow-up
• Respect and trust
Recognition and compensation were emphasised as key factors for retention. Interviewees covered expenses such parking fees and travel costs. Multiple interviewees offered financial compensation such as an honorarium, hourly rate, per diem compensation or gift cards. Compensation varies among projects, provinces within Canada and in other countries.
“You have to find out what is important to the patients themselves, in terms of how to be recognized and compensated for what they are doing”(Patient engagement lead, Canada)
Good communication was reported as another key element for retention. “Some of the things that help with retention is good communications, consistent communications and relatively frequent communications - not going 3–6 months with no contact and then expecting them to just pick it up” (Patient partner, Canada).
Interviewees also emphasised the importance of social aspects such as providing drinks and decent food. Respect, equality and trust were widely mentioned as essential for retention. The level of engagement was also mentioned by interviewees, with shared decision-making and co-production noted as important.
Education and support
• Team support
• Emotional support
• Practical support
• Education opportunities
Education opportunities, ongoing mentorship and support were reported as influential factors for retention. A number of emotional and practical considerations have to be taken into account while working with patient partners such as supportable furniture, timely breaks, transport facilitation and accessible accommodation. For example, one respondent mentioned:
“...the other thing that needs to be paid careful attention to on the food side is some patients have very strict dietary requirements and they need to eat at particular times otherwise they are going to be in a very difficult situation with their health. Those are all considerations that need to be taken into account” (Patient partner, Canada).