|
Design and managing phase
|
|
Meeting I. Length: 3 h, level of involvement: Consultation to Collaboration
|
|
- To clarify expectations and motivation for participation
|
- Individual sticky notes and subsequent sharing of expectations and motivations
|
- List of expectations and motivations for joining the advisory board
|
- The researchers used the contributions from the patient representatives to select PRO-measures for the dialogue tool. The chosen PRO-measures included health-related quality of life plus anxiety and depression. The final decision about PRO-measures was validated by the patient representatives in e-mail correspondence
|
|
- To inform patient representatives about the clinical study
|
- Assurance that the selected PRO-measures are sufficient to prioritize what is important for patients
|
|
- Dias show about the overall study purpose and design
|
|
- To choose PRO-measures for a dialogue tool
|
- Recommendation of PRO-measures on psychological issues in the dialogue tool
|
|
- Exposition of three PRO-measures selected prior to the meeting by the researchers as potential PRO-measures for the dialogue tool
|
|
- The relatives were considered, but to include them would be too wide-ranging. In the final dialogue tool, patients were encouraged to complete PRO together with relatives
|
|
- To choose PRO-measures for research
|
- Suggestion of PRO-measures for relatives because relatives play a major role for many patients in managing their disease
|
|
- The participants were asked to state their three most important issues to discuss
|
|
- Recommendation that completion of PRO-measures must be followed by a conversation
|
|
- Questionnaires designed according to an estimated max time consumption of 15 mins.
|
|
- Group work:
|
|
Completing the PRO-measures
|
- An IT solution for completion at home and at hospital
|
|
- Endorsement of an open-ended question on the most important issues to discuss in the consultation
|
|
Discussing PRO-measures’ suitability to address patients’ concerns
|
- “self-efficacy” and “health-related quality of life” were among domains in the final outcome “battery”, but the potential outcome was difficult to separate from the desired or important outcome
|
|
- Advice on length of the questionnaire: 15 mins for each completion is acceptable
|
|
Selecting PRO-measures
|
|
Discussing the length of the total dialogue tool
|
- Advice on completion: preferably at home in a comfortable environment but possible at hospital
|
|
Discussing completion time
|
|
- Suggestion about outcome measures: “self-efficacy” and “health-related quality of life”
|
|
- Exposition and discussion of relevant domains of PRO-measures for research
|
|
Meeting II. Length: 3 h, level of involvement: Consultation to Collaboration
|
|
- To complete a user-friendly patient information sheet
|
- Dias show about the decisions made since the last meeting
|
- Suggestion for a new title because the original was perceived as too long and not catchy
|
- The new title was used
|
|
- All suggested rewritings were implemented
|
|
- To brainstorm on a training manual for clinicians using PRO in the dialogue
|
- Information on a meeting for participants when results are available was included in the information sheet
|
|
- Group work:
|
- Sentence by sentence rewriting to shorten the text
|
|
Is the information sheet adequate?
|
|
- Rewriting of words that were incomprehensible in order to make it user-friendly
|
- The final version was sent out by e-mail and approved in the advisory board
|
|
All members received two draft versions before the meeting; one for the intervention group and one for the control group
|
|
Are the language and grammar easy to understand?
|
- Due to lack of time, the patient representatives were not further involved in the development of a training manual
|
|
- Advice to arrange and inform about a meeting to feed back results to participants as a “pay-back” for participation in the clinical trial
|
|
- Short presentation of ideas for a training manual on PRO for physicians
|
|
- Discussion about these ideas (due to lack of time, this was a brief discussion (5 min))
|
- No specific ideas for the training manual besides the ideas presented by PI, but the involvement of clinicians was highlighted as an important next step
|
|
Pre-meeting III. Length: 1 h, level of involvement: Not applicable
|
|
- To introduce two new patient representatives
|
- Face-to-face meeting with one new patient representative
|
- Willingness to contribute as a patient representative
|
- Both new patient representatives were included in the advisory board
|
|
Inform about the clinical project, PPI, and responsibilities
|
|
- Telephone meeting with another patient representative
|
|
Meeting III. Length: 2 h, level of involvement: Consultation to Collaboration
|
|
- To welcome the new patient representatives
|
- Information about different methods for the intervention fidelity (e.g., interview, observation, audio recording)
|
- A joint decision to use audiotaped recordings of consultations
|
- Establishment of an ad-hoc sub group
|
|
- To inform about methods of monitoring, documenting and analyzing the way PRO is used in the consultation
|
- Willingness to engage as co-creators in the analysis process
|
- Contacted the founder of the coding system professor A. Finset in order to set up training and work schedule
|
|
- Information on estimated process and time schedule for collecting and analyzing data
| ○ Spend the additional time needed to engage in this work |
- Signed contract about confidentiality and salary
|
|
- To select an intervention fidelity study design
| ○ Obtain training in a specific coding system |
|
- Discussion and decision about method and level of PPI
|
| ○ Code separately |
| ○ Meet for discussions |
|
Undertaking phase
|
|
Traininga. Length: 7 h, level of involvement: Collaboration
|
|
- To learn how to code audiotaped consultations according to VR-CoDES
|
- Training in theory and method of the coding system
|
- The patient representatives engaged in the entire training session
|
- Knowledge to apply VR-CoDES to other transcripts on audiotaped consultations
|
|
- To decide how to map the use of PRO in the audiotaped consultations
|
- Practical exercise in coding exercise transcriptions
|
- Joint discussion and decision about how to code the use of PRO
|
- Practical experience of using the VR- CoDES
|
|
- Supervision by professor A. Finset
|
- Agreement of a plan for the mapping of the use of PRO in the consultation (six questions to address the use of PRO)
|
|
- Discussion on monitoring the use of PRO in consultations
|
|
Homework Ia. Length: 3–4 h, level of involvement: Co-creation
|
|
- To apply the VR-CoDES to transcripts of audiotaped consultations
|
- Individual coding (part I) of three consultations with audiotaped length of 11–26 min. Each (7–13 A4 pages each)
|
- Individual training and familiarity with the VR-CoDES
|
- The underlying basis for collaboration on the analysis
|
|
- To code the use of PRO
|
- Coding of all three audiotaped consultations
|
|
- Focus on PRO in the consultations
|
|
Consensus meeting Ia. Length: 3 h, level of involvement: Co-creation
|
|
- To compare and discuss the individual application of VR-CoDES
|
- Comparing our codes with each other’s and with the codes produced by A. Finset
|
- Expressions of being emotionally touched by the confrontations with fellow patients’ hard consultations
|
- Consensus on how to code
|
| ○ We all agree on how to code a patient’s emotional concern or hint of concern, but the character of the hint or the response by the physician is more complicated to code, leading to varied views on why a patient hints various concerns and why physicians respond as they do |
|
- To compare and discuss the use of PRO
|
Typical agreements and disagreements
|
- Emphasizing the importance of the patient-physician relationship in regard to the communication flow
|
- Consensus on the use of PRO
|
| ○ The three most important issues to discuss are used as a starting point of the dialogue |
|
Discussion about consensus
|
|
- Emphasizing the importance of the patient’s position in the course of a disease for the character of hints
| ○ Difficult to tell if PRO symptoms and function are used |
|
- Comparing our answers to the six questions to address the use of PRO
|
| ○ Mainly, the physician initiates the dialogue |
|
- Arguments on how a physician response can depend on how experienced a physician is
|
|
- Joint mapping of how PRO was referred to, initiated and used
|
|
Homework IIa. Length: 4–5 h, level of involvement: Co-creation
|
|
- To apply the VR-CoDES to transcripts of audiotaped consultations
|
- Individual coding (II) of three consultations with an audiotaped length of 14–60 min each (9–24 A4 pages each)
|
- Individual training and familiarity with the VR-CoDES
|
- The underlying basis for collaboration on the analysis
|
|
- To code the use of PRO
|
- Additional focus on the use of PRO in the consultations
|
|
- Coding of all three audiotaped consultations
|
|
Consensus meeting IIa. Length: 3 h, level of involvement: Co-creation
|
|
- To compare and discuss the individual application of VR-CoDES
|
- Comparing our codes to each other’s and to the codes produced by A. Finset
|
- One patient representative told about hearing information about prognosis that she had tried to avoid in relation to her own disease
|
- None of the patient representatives regret having been involved in the co-production
|
|
- To compare and discuss the use of PRO
|
Any typical agreements and disagreements
|
- The ad-hoc sub-group is more aligned in the codes than at last consensus meeting
|
|
- One patient representative highlighted that a repeated question from a patient to a physician may not indicate an underlying concern, but might indicate an unacceptable physician response
|
- A new vocabulary and perspective to talk about the dialogue based on PRO in the consultation
|
|
- To discuss the impact of co-creation so far and going forward
|
- Comparing our answers to the six questions to address the use of PRO
|
- Validation of cues and concerns found (by patient representatives)
|
|
- The dialogue tool was used as intended in all the audiotaped consultations
|
|
- The analysis revealed that the open-ended questions were the starting point of the dialogue, but we were unable to tell if the validated PRO-measurements were used during the consultations
|
|
- Recognition of the concerns and the questions in the audiotaped consultations
|
|
- Joint mapping of how PRO was referred to, initiated and used
|
|
Workshop on evaluation of the impact of PPIa. Length: 2½ hours, level of involvement: Co-creation
|
|
- To work out challenges in doing PPI in our case
|
- Discussions about engaging in this research project based on an interactive presentation software
|
- Guiding points for patient representatives and researchers in doing PPI, e.g.:
|
- Co-creation was feasible in the case
|
|
- To determine the impact of PPI on the patient representatives, the researchers and the outcome
|
- PPI was beneficial throughout the research process in order to incorporate the perspectives of patients with metastatic melanoma
|
| ○ Clarify responsibility and expectations explicitly |
- The validation of output and outcome assisted in a recognition of own contributions
|
|
- Gathering advice for other patients and researchers who engage in PPI in research
|
| ○ Be aware of information harm |
| ○ Create room for trust and respect to unfold |
|
- Validation of contributions and outcomes
|
| ○ Be aware of expenses (time and money) |
|
- Validation of the outputs and outcomes presented by PI. A few more were added
|
|
Disseminating phase
|
|
Meeting Ib. Length: 2½ hours, level of involvement: Co-creation
|
|
- To plan participation at an international conference on quality of life research (patient research partner scholarship obtained)
|
- Discussing different invitations to participate in session and panel discussions about patient engagement in research
|
- Joint decision to participate at one session as panelists and in one session as an active audience member
|
- Feedback to the session organizers about our decisions about participation
|
|
- Joint performances to demonstrate and display our cooperation in the research process
|
|
- To discuss the first draft of a poster made by PI
|
- Discussing the content, layout, and presentation of the poster
|
- Poster
|
- Poster finalized by PI included the input from the patient
|
| ○ Layout is agreed upon as introduced by PI |
| ○ Content is agreed upon, but with the idea to outline considerations about PPI in research from both the researchers’ and patients’ perspectives |
|
Tele-conference with organizers and panelistsb. Length: 1 h, level of involvement: Not applicable
|
|
- To receive an introduction about the session in which we were to become panelists
|
- Meeting the organizers and other panelists
|
- Initial preparation as panelists
|
- The initial preparation for the joint performance
|
|
- Discussing the format and questions for the panelists
|
|
Meeting IIb. Length: 2 h, level of involvement: Collaboration
|
|
- To finalize the preparation for the conference
|
- Discussing the questions for the panelists
|
- Final preparation for the conference and our performances
|
- Confidence in our performance
|
|
- Brainstorming answers for panel questions
|
- Check on practicalities, such as travel documents and the conference programme
|
|
- Discussing travel and conference programme
|
|
Participation at ISOQOL conference 2019b. Length: 4 days, level of involvement: Collaboration
|
|
- To present our work on PPI together
|
- Poster presentation on PPI in research
|
- Numerous responses to our presentations
|
- International acclaim for our work on PPI in cancer care
|
|
- To network with researchers and stakeholders interested in patient engagement
|
- Panel discussion on patient engagement in research
|
- International network
|
|
- Informal dinner with Special Interest Group for Engagement
|
|
- Participating in sessions about PPI
|
|
Meeting IIIb. Length: 2 h, level of involvement: Collaboration
|
|
- To go over the paper based on a thorough, individual perusal
|
- Discussion of results and discussion paragraph
|
- One patient representative participated in publishing the present article
|
- Agreement between all authors
|
|
- To obtain consensus on the content
|
- Writing of layman summary
|
- Layman summary written by patient representative and PI
|
|
- Review and approval of the article
|
|
Meeting IIIIb. Future planning, level of involvement: co-creation
|
| |
- Feedback of results to clinicians is to be planned in detail
| |
|
- Feedback of results to participants is to be planned in detail
|
