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Table 1 Overview of meeting activities in the SWG and their evaluation

From: Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers

Time Agenda/Activities Objectives Evaluation
Material sent out before Meeting 1:
 - Agenda
 - Information about project
Meeting 1
January 2015
Themes: Introduction to the work.
Preparation of interviews.
Presentation: About the project Introduce background of the project.  
Introduction of group members – “check-in” session. Introduce all members, establishing sense of equality. One patient representative mentions in an interview that formal discussions could have been held during dinnertime to shorten the meeting program and that the meetings in general could have been more efficient by cutting down on the more personal parts. Another patient representative mentions in an interview that it was good to be able to talk more informally between the structured meeting activities. Researchers in general comment in the interviews that it strengthened the sense of equality that all participants shared what was going on in their lives at the moment.
Mindfulness exercise. Create the right atmosphere for working with a mindfulness intervention and introducing mindfulness for those not already familiar with it. SWG members (members) appreciated the exercise as exemplification of contents of the intervention. Some liked doing the exercise and others did not find it commendable for them. One researcher mentioned that doing the exercise contributed to the sense of community.
Framing the work of the working group – “Circle of Control”. Establish a clear definition of the scope of the project – what can be affected and what cannot. (Fig. 2). The model worked out very well to clarify the task and expectations and to help members stay focused on the work.
Match of expectations: “What benefits do you want from the project” and “How can you contribute to the project?”. Personal reflection and plenary discussion. Ensure a match of expectations before initiating the collaboration and create a sense of ownership in the project. This activity was not considered very important for the patient representatives in the interviews, but researchers interviewed found it crucial to give opportunity to members of sharing their expectations and also get knowledge about patient representatives’ incentives for participating.
Dinner and time for informal discussion. Getting to know each other, heighten the sense of equality among participants, and show appreciation of people spending their free time on the project. It was agreed by all members that the informal and delightful meal was an important part of the meetings and helped create a good atmosphere.
Exercise from interview guide: “What term should be used to describe a person in your situation?”. Free discussion and discussion over pre-defined labels, e.g. “cancer survivor”, “women treated for breast cancer”, “previous cancer patient”, “cancer patient”. Test how the exercise would work. It became evident that the terminology was important to the patient representatives. There was general agreement that the Danish translation of the word “cancer survivor” was not suitable for how the patient representatives experienced their own situation. This opinion was also dominant during the focus group interviews and individual interviews. The term “woman treated for breast cancer” and “man treated for prostate cancer” were the most favorable terms and were hence used throughout the project for describing the target group for the project.
Discussion about interview guide. Have patient representatives’ perspectives on the questions and wording of them. This discussion qualified the interview guide and allowed the research group to do crucial adjustments. During the discussion, it became clear that patient representatives are not merely patients, but also carry along “dual competencies” consisting of professional qualifications and other experiences.
Discussion about name of the program. Find a name for the program matching patient representatives’ preferences. The researchers thought that it would be important for the patient representatives what to name the program, but they were clear about the fact that they did not find this matter very important. Nevertheless, a suggestion from one patient representative ended up as the popular name of the project.
Material sent out before Meeting 2:
 - Agenda
 - Meaning condensation of interviews
Meeting 2
March 2015:
Evaluation of interviews.
Preparation of program.
“Check-in”. Possibility of sharing state of mind; personal, professional, disease-related or not, of own choice. (Evaluated above)
Discussion of results from interviews. Get patient representatives’ perspectives on the interviews. Patient representatives made it clear that they did not find themselves capable of analyzing meaning condensations from interviews; they did not feel they had the necessary skills – this was a job for the research group.
Presentation: Introduction to I-MBCT as a program. Increase the knowledge about the program in charge in our project. The presentation was valued by patient representatives and gave an improved understanding of the contents of the intervention.
Dinner and time for informal discussion.   (Evaluated above)
Discussion about video material. Get patient representatives’ views on video material. Comments on how video material was regarded by patient representatives were very useful for adjusting. Comments focused on the presenter’s appearance in the video. In general, a known professor was preferred over an unknown PhD student to emphasize the authority of the message being delivered.
Discussion about ethics and security in the program. Get patient representatives’ views on safety concerns from the user’s perspective. This matter was of high concern among the researchers, but not of very high interest among patient representatives, who relied on the research group to be in control of things.
Material sent out before Meeting 3:
 - Agenda.
 - Information material for participants in RCT.
 - Login to I-MBCT.
 - Questions to consider when looking at I-MBCT.
Meeting 3
June 2015
Presentation of program draft, discussion of information material.
“Check-in”. Possibility of sharing state of mind; personal, professional, disease-related or not, of own choice. (Evaluated above)
Presentation: Project Status. Updating members on the status of the project.  
Revisiting “Circle of Control”. Ensure a continued focus on the scope of the work. It appeared to be a simple and straightforward way of ensuring the focus on the task.
Comments on beta version of I-MBCT. Initial comments from patient representatives’ perspective. Patient representatives gave suggestions for how to improve the design of the program by adding visual elements and commented on the length and wording of the texts.
Comments on information material for study participants. Ensuring that all relevant information is covered and that it is understandable. Patient representatives asked questions about wording and structure of the information material and raised crucial understanding issues.
Dinner and time for informal discussion.   (Evaluated above)
Planning further development. Delegation of tasks and agreement about video recordings.  
Discussion about project procedures; recruitment and information material. Based on personas. Exploring the way through the study from fictitious patients’ (personas) perspectives. The outcome of the exercise was useful and gave some very good insights into the process of being a patient. The discussion was based on the patient representatives’ own experiences, not the imagined experience of the personas.
Material sent between meetings:
 - Test login to I-MBCT.
 - Feedback template and request for feedback on program.
Material sent out before Meeting 4:
 - Agenda
Meeting 4
January 2016
Themes: Discussion of feasibility study.
Evaluation of work in the SWG.
“Check-in”   (Evaluated above)
Discussion: Comments on the program. Evaluation of program based on participants testing it at home. Only few members logged in a couple of times, and no feedback was given in the intended form. The researchers’ own reflections in the interviews are that the task was too unspecified and too comprehensive. One patient representative mentions in an interview that it was probably too much to ask for and that it would have probably worked better if all had met and jointly tested the program. One researcher mentions in an interview that it would have been beneficial to do an extra meeting with the purpose of testing the program together.
Discussion: Comments on video material for program. Evaluation of video material. Overall, the video material received positive response.
Presentation: Results from feasibility study. Sharing results from the work we have been doing. Patient representatives found it interesting to hear about the results from the feasibility study.
Dinner and time for informal discussion   (Evaluated above)
Evaluation: Write down “good”, “could be better”, “good advice” on green, red, and yellow post-its. Evaluation on: Level of information, My own cancer illness, Workload, Meetings, Contribution to project, Other. Evaluation of work in the SWG. The method for evaluation worked out well as it allowed all members to contribute with what was on their mind. The evaluation of the specific topics is described elsewhere in this paper.
Presentation of conference abstract about the work in the working group. Sharing results of research conducted on the basis of the working group in the official form. One researcher quotes a patient representative’s reaction to the abstract: “Well, it is right that this is what we have been doing, and that is OK, but where is the magic?” (researcher, interviewed). The statement underlines that not only researchers but also patient representatives have experienced a special atmosphere in the collaboration that is beyond the formal work done in the working group.