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Table 2 Engagement of the patients/parents on the quality team (QT)

From: Lessons from patient and parent involvement (P&PI) in a quality improvement program in cystic fibrosis care in France

Information and activation of the patients/parents 1. The patients and parents are educated regularly (annually or more often) by the team about general subjects concerning cystic fibrosis care and research.
2. The patients and parents are rather familiar with general cystic fibrosis information: research, progress made, and Registry data.
3. The CFC team has educated the patients and parents about the PHARE-M’s importance and aim.
4. A good relationship between the patient or parent recruited and the team is indispensable for the patient or parent to participate in the PHARE-M.
5. The patient or parent recruited is well informed of the challenges (10 commitments) of management quality.
6. The presence of a patient or parent on the steering team is a given and an asset.
7. The place of a parent or patient is not on a quality team, because he or she does not have enough training or education.
8. The place of a parent or patient is not on a quality team, because he or she already has too many personal problems to manage.
9. The patient or parent recruited possesses the qualities to become a member of the steering team.
10. The patient or parent recruited must have developed coping skills (see therapeutic education standard: knowing how to manage emotions and stress; solving problems, making decisions, and making choices; knowing how to communicate and being adept in relationships with others; and knowing how to put oneself in the place of others).
Empowerment of patients/parents to allow them participate in the QT 1. The participation of a patient or parent depends on the systematic reimbursement of his or her travel expenses.
2. The participation of a patient or parent should be facilitated by the reimbursement of other expenses: child-care, lost working hours, etc.
3. The participating patient or parent does not represent all patients.
4. The patient or parent was selected by the team based on a list of specific criteria (cultural level, capacity to communicate, availability, etc.).
5. The patient or parent is motivated to improve management for all.
6. The patient or parent is also motivated to improve his or her own management by participating in the program.
7. It is important to communicate with the other patients or parents concerning the role of the patient or parent on the steering team.
8. It would be necessary to include several patients or parents to ensure that more different points of view are represented.
9. The patient or parent must be knowledgeable about the disease and its management beyond the requirements of his or her own care.
10. The patient or parent must be knowledgeable about the general functioning of the hospital.
11. The patient or parent must know how to communicate with the professionals by taking a step back and drawing general lessons from his or her own experience.
Capacity for effective contribution of the patients/parent 1. The PHARE-M national organization created good conditions for incorporation of the patient or parent.
2. The participation of a patient or parent on the team at French national training and information meetings (four French national face-to-face “EPE” meetings) is indispensable.
3. The patient or parent participated and contributed as much as the professionals during the French national “EPE” meetings.
4. The patient or parent’s regular participation at quality team meetings at the CFC is indispensable.
5. The patient or parent participates in and contributes significantly to the work of the steering team.
6. The patient or parent’s ideas and proposals are generally taken into account by the steering team.
7. The atmosphere of work of the steering team meeting is better and more productive when the patient or parent is present.
8. The pace of work is slower when the patient or parent is present at the steering team meeting.
9. Certain decisions made by the steering team are inspired by the patient/parent.
10. The process of incorporation and participation of the patient or parent should be reviewed and improved for the continuation of the PHARE-M.