Quantitative phase
All FMRs who completed the PBLP workshop (n = 16) responded to the questionnaire on the perceived usefulness of the patient partner in teaching participation in the training. Figure 1 presents the percentage of responses obtained using a four-point Likert scale (strongly agree - agree - disagree - strongly disagree). The majority of FMRs mentioned having improved their knowledge of care offered in partnership with patients after the workshop but not their understanding of patients' rights (56.3% disagree). Three topics brought different opinions that were explored during the focus group: knowledge of the patient's living and organizational environment, knowledge of the care ethics, and the change in FMRs’ perspective on the patient's role in the healthcare system.
Qualitative phase
Four FMRs agreed to participate in the 55-minute focus group. Two major themes emerged from the analysis: 1) the knowledge and skills sought and 2) the factors influencing the partnership with the patient partner in teaching.
Knowledge and skills sought
Understanding patients' experiences
For all the FMRs who participated in the PBLP workshop, the presence of the patient partner in teaching allowed a better understanding of the patients' experiences. The FMRs’ comments during the focus group were centered on the experience of living with the disease and the trajectory of care and services. The patient partner in teaching made it possible to conceptualize learning in a realistic way and to offer another perspective on the healthcare system.
"[...] patient partners can guide us through the healthcare system, the care system, the patient experience, I think [...] they are very relevant." (H1)
"I think a patient's experience can help put treatments into perspective, the things we discuss, and the care trajectory too. When we were talking about examinations and so on, [...] it is having a realistic conceptualization of what we're learning, [...]. (F2)
Acquiring professional skills
The PBLP workshop covered clinical and technical procedures related to COPD (clinical picture, pump use, etc.). The FMRs reported that they appreciated this more practical part of the training, where patient partners in teaching shared their experience with pump use. A better understanding of the difficulties involved has enabled FMRs to acquire therapeutic teaching skills to better prevent issues related to the use of pumps by patients. Finally, some FMRs believe that the presence of a patient partner in teaching can help less experienced FMRs make better diagnoses.
"It was super relevant when he [the patient partner in teaching] explained a little bit for him, what's involved taking the pumps." (F1)
"[...] I think it can help us make a better diagnosis, because we can see a bit of a patient, not just a disease in books." (H2)
Understanding the reasons for nonadherence to treatment
Sharing the patient partner in teaching's experience was particularly helpful in providing a better understanding of the reasons for patients refusing treatment and being more aware of the importance of offering different treatment options. Therefore, a better understanding of nonadherence to treatment fostered the development of FMRs empathy.
"[...] when we offer two treatments, to understand what the repercussions are, to have a better understanding of why a patient might refuse a test, [...] what makes them stop taking their medication, [...] we are there with more compassion, empathy for patients" (F1)
Understanding the ethics of care
The data collected showed different perspectives from the FMRs regarding the perceived usefulness of the patient partner in teaching to better understand the ethics of care. The ethical situations reported helped to raise awareness among certain FMRs for their future practice, while other FMRs were unsure of the role the patient partner in teaching could play in their understanding of care ethics, as they felt it was difficult to transfer this to another situation.
"[...] to have people who have experienced these situations, [...] I find that it can be extremely rich, if we are also talking about major medical ethical dilemmas." (F2)
"[...] In ethics, I think that each situation is unique. [...] and ethical situations, we have guides to refer to, phone numbers to call for specific situations. " (F1)
Understanding patients' rights
During the focus group, the FMRs confirmed that the PBLP workshop did not provide a better understanding of patients' rights. Although all the FMRs were able to mention examples such as the right to autonomy, confidentiality, access to care and respect for the person, this knowledge was acquired as part of their previous training. Nevertheless, they felt that the presence of a patient partner in teaching could help improve their understanding of patients' rights.
"I think that in the context of this activity, I felt it less. However, I think, yes, it can make us more aware of choices." (F2)
Understanding the role of patient partners in teaching
Although the question of the patient's role in the healthcare system was posed in a broad sense, the discussions focused on the patient's role as a trainer, as it was not clear for all FMRs. Some comments from the FMRs indicated that to improve future workshops, the role of the patient partner in teaching should be better clarified and defined.
"[...] his role could have been better established, or more targeted questions could have been put to him to avoid him [the patient partner in teaching] from interacting at times when it was perhaps less addressed to him [...]." (F2)
Factors influencing the partnership with the patient partner in teaching
Previous FMRs’ experiences
Following the announcement of the patient partner in teaching's presence at the PBLP workshop, some FMRs reported their apprehension due to their previous experience during their medical training. According to them, the presence of the patient partner in teaching altered the learning objectives of the training.
"I think that, when there are patient-partners, it is often meetings that I'm a little apprehensive about. [...] in fact, the objective of the meetings is completely different." (F2)
The importance of advance preparation
FMRs emphasized their perspective on the importance of preparing the patient partner in teaching as well as themselves. According to them, the teaching team should pay particular attention to the preparation of patient partners in teaching so that they are able to detach themselves from their personal situation, to generalize what they are saying to all patients living with COPD and to give constructive feedback at the appropriate time. For the FMRs, the unpredictability of meeting a patient partner in teaching generated emotions of discomfort and destabilization among them.
"[...] It is interesting that they are perhaps a little better trained to understand what the purpose of their input is." (F1)
"[...] we are not prepared, and we do not know what we are going to discuss, I think that adds to the discomfort." (F2)
Difficulty communicating with the patient partner in teaching
As part of the PBLP workshop, the FMRs raised the issue of their difficulty in communicating with the patient partner in teaching. Having to adapt their medical vocabulary to better establish a dialog with the patient partner in teaching was perceived as a barrier to discussions between the FMRs.
"[...] Of course, we adapt our vocabulary differently, but we cannot speak to each other in colloquial language when we are talking about medicine, because we have studied a lot in this area, and we speak further afield." (F1)
Difficulty in recognizing experiential knowledge
The FMRs’ comments in the focus group showed that recognition of the patient partner in teaching experiential knowledge remained a more difficult element to grasp. The patient partner in teaching's testimony might not be understood for its value and for what it said about the trajectory of patient care and their experience of the disease but was instead referred to the patient's personal experience, which could be linked to their character or individual perspective/belief of the situation:
"[...] the patient-partner remains a person, a personality. [...] at the same time, he [patient trainer] brings things, but maybe he was not the best personality for this type of encounter." (F1)