Introduction
Prior to March 2020 and the COVID-19 pandemic, telehealth (TH) provided an alternative to routine in-person care as a way to increase access to healthcare for patients with chronic conditions, including cystic fibrosis (CF), who reside in remote areas and who have difficulties travelling to their centres.1 2 However, most US CF centres were unfamiliar with incorporating TH or telemedicine techniques into routine CF care. During the COVID-19 pandemic, in an effort to minimise person-to-person transmission of SARS-CoV-2 and spare scarce resources, including personal protective equipment (PPE), routine in-person visits were abruptly halted. This forced CF care centres, like many other outpatient practices, to rapidly embrace virtual visits.3 4
Problem description
Pandemic demanded a change in care delivery from in-person to virtual care. Few CF teams had TH experience. Teams needed to learn together best practices for interdisciplinary, coproduced care in a virtual setting.
The Cystic Fibrosis Learning Network (CFLN), formed well before the COVID-19 pandemic, is comprised of 39 interdisciplinary paediatric and adult CF teams from centres accredited by the Cystic Fibrosis Foundation (CFF). Transition from a paediatric to the adult team usually occurs when the patient is ready for transition and is recommended at the latest when the person with CF turns 21 years. All CFLN teams are multidisciplinary teams that are part of CFF-accredited centres. The team structure differs slightly from centre to centre and generally includes CF physicians, nurse coordinators, respiratory therapists (RT), registered dietitians (RD) and social workers (SW). Some teams also include advance practice practitioners, physical therapists, pharmacists or pharmacy technicians and psychologists. A CFLN centre quality improvement (QI) team may include all interdisciplinary team members or only some team members. In addition, when joining the CFLN, the teams identified, on-boarded and included a patient and family partner (PFP) in their QI team. Pre and post pandemic structure of the CFLN teams was supposed to be identical. Due to furloughs, at the beginning of the pandemic, the team structure shifted, with less team members being available for CF clinics. Based on 2020 registry data, subspecialty (RT, RD, SW) care was provided for 95% of people with CF (PwCF) on annual bases.5 The CFLN teams work together on network-level measures to improve care and outcomes for PwCF and their families through innovative learning structures.6 7 To achieve success, CFLN care centre teams ideally maintain a leadership triad, including a physician leader, QI leader and a PFP. The QI leader is a team member who helps with QI tools, measurement, data collection and data submission. A PFP, is a PwCF or family member of a PwCF who collaborates closely with the CF teams, participates to meetings, helps make decisions and share responsibilities with the team, related to CF centre, QI and leadership activities, locally and/or at the network level. The network leadership team (NLT) guiding CFLN’s priorities includes CF clinicians, adults with CF and parents of children with CF (PFPs).8 The CFLN is in turn supported by staff and faculty based at Cincinnati Children’s Hospital Medical Center.
An innovation lab (ILab) comprises a subgroup of centres interested in learning and innovating in a specific domain. Participating centres are provided the tools and resources to collaborate and create new processes that are then adapted, adopted, shared, tested and refined. The goal of an ILab is to creatively design or redesign systems and/or processes to achieve positive impact through reliable and sustainable processes.
Rationale
The CFLN’s robust infrastructure, experience with agenda setting (AS) and existing ILab learning structure allowed CFLN to pivot quickly to establish the TH ILab early in the COVID-19 pandemic. CFLN teams recognised TH as a priority and gathered together in the TH ILab to create a new CF model of care that would serve families and PwCF, while aiming to maintain a high quality of CF care.
Global aim of TH ILab
Global aim of TH ILab is to deliver coproduced, interdisciplinary CF care that includes TH visits during the COVID-19 pandemic.
Specific aims of TH ILab
Increase the percentage of TH visits with IDC from 60% to 85% by 31 December 2020.
Increase the percentage of TH visits in which patients and families participate in shared AS from 52% to 85% by 31 December 2020.