Journal article
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
Lupus science & medicine, v 8(1), p=
09 Feb 2021
PMID: 33563729
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritise and address top barriers in lupus impacting diagnosis, care, treatment and research. To conduct this process, the ALPHA Project convened a multistakeholder Global Advisory Committee (GAC) of lupus experts and collected input from global audiences, including patients. In phase I, the ALPHA Project used expert interviews and a global survey of lupus experts to identify and categorise barriers into three overarching pillars: drug development, clinical care and access to care. In phase II, reported here, the GAC developed recommended actionable solutions to address these previously identified barriers through an in-person stakeholder meeting, followed by a two-round scoring process. Recommendations were assessed for feasibility, impact and timeline for implementation (FIT), where potential FIT component values were between 1 and 3 and total scores were between 3 and 9. Higher scores represented higher achievability based on the composite of the three criteria. Simplifying and standardising outcomes measures, including steroid sparing as an outcome (drug development) and defining the lupus spectrum (clinical care) ranked as the highest two priority solutions during the GAC meeting and received high FIT scores (7.67 and 7.44, respectively). Leveraging social media (access to care) received the highest FIT score across all pillars (7.86). Cross-cutting themes of many solutions include leveraging digital technology and applying specific considerations for special populations, including paediatrics. Implementing the recommendations to address key barriers to drug development, clinical care and access to care is essential to improving the quality of life of adults and children with lupus. Multistakeholder collaboration and guidance across existing efforts globally is warranted.
Metrics
Details
- Title
- The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
- Creators
- Karin Tse - Lupus Foundation of AmericaSanjyot Sangodkar - Faegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USALauren Bloch - Faegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USAKathleen Arntsen - Lupus and Allied Diseases Association, Inc, Verona, New York, USASang-Cheol Bae - Hanyang University Seoul HospitalIan N Bruce - NIHR Manchester Biomedical Research CentreErin Connolly-Strong - MallinckrodtKaren H Costenbader - Brigham and Women's HospitalBradley Dickerson - AuriniaThomas Dörner - Charité - Universitätsmedizin BerlinSydney Evans - National Patient Safety FoundationKenneth Kalunian - University of California San Diego Medical CenterAmy H Kao - Ono PharmaceuticalSusan Manzi - Allegheny Health NetworkEric F Morand - Monash UniversitySandra C Raymond - Lupus Foundation of AmericaBrad H Rovin - The Ohio State University Wexner Medical CenterLaura Eve Schanberg - Duke Medical CenterJoan M Von Feldt - GlaxoSmithKlineVictoria P Werth - University of PennsylvaniaAngel Williams Derricott - Patient Representative, Richmond, Virginia, USADavid Zook - Faegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USATimothy Franson - Faegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Indianapolis, Indiana, USAKenneth Getz - Tufts UniversityYaritza Peña - Tufts UniversityLeslie M Hanrahan - Lupus Foundation of AmericaALPHA Project Global Advisory Comm
- Publication Details
- Lupus science & medicine, v 8(1), p=
- Publisher
- British Medical Journal (BMJ)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- General Internal Medicine
- Web of Science ID
- WOS:000616723600001
- Scopus ID
- 2-s2.0-85101032745
- Other Identifier
- 991021934002704721
UN Sustainable Development Goals (SDGs)
This publication has contributed to the advancement of the following goals:
InCites Highlights
Data related to this publication, from InCites Benchmarking & Analytics tool:
- Collaboration types
- Industry collaboration
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Rheumatology