Evolution of the cystic fibrosis Learning and Leadership Collaborative (2002–2013)
| LLC | Focus | Centres | Methods | Lessons Learned |
|---|---|---|---|---|
| 2002–2003 NICHQ | Paediatric Nutrition and smoking cessation | 16 | National Initiative Children's Healthcare Quality Demonstration Project | CF centre data and measures were centralised |
| 2003–2004 LLCI | Paediatric Nutrition, CFRD and pulmonary | 10 | Intermountain Healthcare Mini-Advanced Training Program specific to CF for invited CF centres | Programme based in hospital systems. More CF specific examples and connection to chronic care needed |
| 2004–2005 LLCII | Paediatric Nutrition, CFRD and pulmonary | 12 | DMIC learning collaborative offered to accredited CF centres. Conference calls, listserv, adapted microsystem action guide for CF | Standardised improvement methodology and language awkward but good fit with CF centres and content customised to CF |
| 2005–2006 LLCIII | Paediatric Nutrition and pulmonary | 17 | 21 coaches Action guide, public reporting, paediatric benchmarking | Coaches selected and developed from CF community and past LLCs to help CF centres. Prior participants provided CF specific improvement examples |
| 2006–2007 LLCIV | Paediatric Pulmonary | 16 | 22 coaches Mentoring programme, adult benchmarking, QI toolkit on http://www.cff.org Registry data now transparent | Discipline specific mentoring programme further supported staff QI tools and examples on CFF website |
| 2007–2008 LLCV | Paediatric Pulmonary improvement | 15 plus Toronto, Canada | 18 coaches CF specific change ideas QI toolkit posted at http://www.cff.org | Change ideas (pulmonary and nutrition) created from guidelines and benchmarking. CF specific improvement action guide created |
| 2008–2009 e-LLCVI | Paediatric Nutrition and pulmonary | 9 | 10 coaches First site visit (Hartford, CT) Web sessions replaced conference call learning sessions | Transformative experience to visit high performing CF centre. Positively influenced the adaptation of best practices |
| 2009–2010 AQI/CFRD | Adult CFRD | 10 | First adult series Second topic specific focus Web based action guide Site visit (Minneapolis, MN) Online learning and resources | Identified leaders to develop adult care change ideas. CFRD change ideas created and distributed |
| 2010–11 Self study | Nutrition/pulmonary | 4 | 4 coaches | CF action guide online with coaching with limited results |
| 2011–2012 AQI2 | Adult Nutrition and pulmonary | 14 | 10 coaches National patient and family care experience survey Site visit (Minneapolis, MN) Online learning and resources | Growing body of knowledge, tools, checklists and topics specifics to transition and referrals. New measurement modules developed |
| 2012–2013 AQI3 | Adult Nutrition, pulmonary, transition of care, end of life, referrals | 10 | 10 coaches Site visit (Minneapolis, MN) Online learning and resources 3 part measurement curriculum | Adult CF healthcare professionals from past AQI session teach examples and experiences. Measurement faculty adds coach and CFFPR registry specialist, special interest groups |
| 2012–2013 LLC8 | Paediatric/adult Nutrition and pulmonary | 10 | 12 coaches Site visit (Minneapolis, MN) Online learning and resources 3 part measurement curriculum | Aimed to include smaller CF practices |
AQI, adult quality improvement; CF, cystic fibrosis; CFF, CF Foundation; CFRD, cystic fibrosis related diabetes; CFFPR, CF Foundation Patient Registry; DMIC, Dartmouth Microsystem Improvement Curriculum; LLC, Learning and Leadership Collaborative.