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Table 9 Success factors sustaining long term patient and parent involvement in QI projects

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

Factors related to patients and parents:
• Good relationship with the care team
• Coping with the disease, its complications and the effects of treatments
• Stable health condition of the patient or the child of the parent
• Stable socio economical family situation
• Motivation to improve care for all (beyond improving care for oneself)
• Possibility of involving more than one patient or parent in the team to insure the presence of one of them at each meeting and to bring diverse experiences to the discussions (for instance parents of children of various ranges of age or transplanted and non transplanted patients…)
• Ability to give time to the project, participating to the trainings and local meetings, and availability of communication tools (internet) at home
Factors related to the care team:
• Mature relationship with the patient/parent: readiness to a partnership for care, being at ease with shared decision making and/or patient education
• Leadership wishing to involve patients/parents on a long-term basis, « playing the rule » of transparency and effectively taking the responsibility for the project and for the change actions implemented
• One professional being the correspondent of the patient/parent for the QI project solving practical issues
• Awareness to the guidelines and consensus for care and ability to discuss/share them with the patient/parent
• Attention paid to psychosocial difficulties encountered by the patient potentially contradictory with their involvement
Factors related to the QI method
• Present the involvement of a patient/parent as a pre-requisite to engage in QI work, based on literature and a « safe » framework to recruit them
• Take the financial charge of patient and parent involvement at the program level (thanks to an agreement with the patient organizations if possible)
• Offer an appropriate set of communication tools towards the patients/parents followed at the center, including the patient group if any, as well as towards the hospital administration
• Provide the same training on the quality methods and tools to the professionals and the patients/parents involved
• Install resources for the QI work at the centre and manage the regular participation of the patient/parent or his update on the project
• Secure the framework with ethical rules allowing full participation of all members, recalling roles and responsibilities
• Offer new perspectives to the whole teams including the patient or parent involved, facilitating benchmarking with other practices,
• Provide access to guidelines and consensus for care to the whole team including to the patient or parent
• Provide an on-site Coaching to support the team in analyzing their processes of care from the point of view of the patient/parent (shadowing a patient) and reinsuring the place of the patient/parent involved
• Consider that the results achieved are attributable to the whole quality team and beyond, to the multidisciplinary team who implement the new process of care, and not to one member in particular, be it a patient/parent or a professional