RESUMEN
The findings of this body of work are presented in the eight articles included in this supplement. The impact and perspectives of adult and pediatric care teams and patient/families are covered with special attention to mental health care, the financial and personnel impacts within care programs, the experiences of vulnerable and underrepresented patient populations, and implementation of remoting monitoring. Commentaries from colleagues provide a broader perspective, offering reflections on the findings and their implications regarding the future CF care model.
Asunto(s)
COVID-19 , Fibrosis Quística , Prestación Integrada de Atención de Salud/organización & administración , Atención a la Salud/tendencias , Telemedicina , COVID-19/epidemiología , COVID-19/prevención & control , Control de Enfermedades Transmisibles/métodos , Continuidad de la Atención al Paciente , Fibrosis Quística/epidemiología , Fibrosis Quística/terapia , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Humanos , Innovación Organizacional , SARS-CoV-2 , Telemedicina/organización & administración , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
A quality healthcare system is coproduced by patients, families and healthcare professionals working interdependently to cocreate and codeliver care. Cystic fibrosis (CF) patients and families rely on healthcare professionals to provide the best possible care and timely, accurate information. They know that the care at home and in clinical settings needs to be seamless, using shared information and decisions. A parent's journey of better care begins with her son's diagnosis and moves to her involvement to improve the systems and processes of care for others. She reflects on this work and identifies five elements that contributed to the coproduction of improved care: (1) mental and emotional readiness to engage; (2) curiosity and the search for insight; (3) reframe challenges into opportunities for improvement; (4) listen and learn from everyone, bringing home what is relevant; and (5) personal participation. Joined with the reflections of an improvement scientist, they note that chronic care relies on informed, activated patients and prepared, proactive healthcare professionals working together and that it is more than 'patient-centric'. They propose a model for the coimprovement of systems of care.