The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
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 Committ...
Main Authors: | , , , , , , , , , , , , , , , , , , , , , |
---|---|
Format: | Article |
Language: | English |
Published: |
BMJ Publishing Group
2021-09-01
|
Series: | Lupus Science and Medicine |
Online Access: | https://lupus.bmj.com/content/8/1/e000433.full |
id |
doaj-5818f0eec0ce4fc69c7eeb81a3be9cc1 |
---|---|
record_format |
Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Kenneth Kalunian Susan Manzi Amy H Kao Eric F Morand Brad H Rovin Karen H Costenbader Karin Tse Laura Eve Schanberg Yaritza Peña Kathleen Arntsen Kenneth Getz Joan M Von Feldt Erin Connolly-Strong Sanjyot Sangodkar Lauren Bloch Bradley Dickerson Sydney Evans Sandra C Raymond Angel Williams Derricott David Zook Timothy Franson Leslie M Hanrahan |
spellingShingle |
Kenneth Kalunian Susan Manzi Amy H Kao Eric F Morand Brad H Rovin Karen H Costenbader Karin Tse Laura Eve Schanberg Yaritza Peña Kathleen Arntsen Kenneth Getz Joan M Von Feldt Erin Connolly-Strong Sanjyot Sangodkar Lauren Bloch Bradley Dickerson Sydney Evans Sandra C Raymond Angel Williams Derricott David Zook Timothy Franson Leslie M Hanrahan The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research Lupus Science and Medicine |
author_facet |
Kenneth Kalunian Susan Manzi Amy H Kao Eric F Morand Brad H Rovin Karen H Costenbader Karin Tse Laura Eve Schanberg Yaritza Peña Kathleen Arntsen Kenneth Getz Joan M Von Feldt Erin Connolly-Strong Sanjyot Sangodkar Lauren Bloch Bradley Dickerson Sydney Evans Sandra C Raymond Angel Williams Derricott David Zook Timothy Franson Leslie M Hanrahan |
author_sort |
Kenneth Kalunian |
title |
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
title_short |
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
title_full |
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
title_fullStr |
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
title_full_unstemmed |
The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
title_sort |
alpha project: establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research |
publisher |
BMJ Publishing Group |
series |
Lupus Science and Medicine |
issn |
2053-8790 |
publishDate |
2021-09-01 |
description |
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. |
url |
https://lupus.bmj.com/content/8/1/e000433.full |
work_keys_str_mv |
AT kennethkalunian thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT susanmanzi thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT amyhkao thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT ericfmorand thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT bradhrovin thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT karenhcostenbader thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT karintse thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT lauraeveschanberg thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT yaritzapena thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT kathleenarntsen thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT kennethgetz thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT joanmvonfeldt thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT erinconnollystrong thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sanjyotsangodkar thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT laurenbloch thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT bradleydickerson thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sydneyevans thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sandracraymond thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT angelwilliamsderricott thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT davidzook thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT timothyfranson thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT lesliemhanrahan thealphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT kennethkalunian alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT susanmanzi alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT amyhkao alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT ericfmorand alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT bradhrovin alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT karenhcostenbader alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT karintse alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT lauraeveschanberg alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT yaritzapena alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT kathleenarntsen alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT kennethgetz alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT joanmvonfeldt alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT erinconnollystrong alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sanjyotsangodkar alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT laurenbloch alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT bradleydickerson alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sydneyevans alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT sandracraymond alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT angelwilliamsderricott alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT davidzook alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT timothyfranson alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch AT lesliemhanrahan alphaprojectestablishingconsensusandprioritisationofglobalcommunityrecommendationstoaddressmajorchallengesinlupusdiagnosiscaretreatmentandresearch |
_version_ |
1717373626417676288 |
spelling |
doaj-5818f0eec0ce4fc69c7eeb81a3be9cc12021-09-21T07:30:04ZengBMJ Publishing GroupLupus Science and Medicine2053-87902021-09-018110.1136/lupus-2020-000433The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and researchKenneth Kalunian0Susan Manzi1Amy H Kao2Eric F Morand3Brad H Rovin4Karen H Costenbader5Karin Tse6Laura Eve Schanberg7Yaritza Peña8Kathleen Arntsen9Kenneth Getz10Joan M Von Feldt11Erin Connolly-Strong12Sanjyot Sangodkar13Lauren Bloch14Bradley Dickerson15Sydney Evans16Sandra C Raymond17Angel Williams Derricott18David Zook19Timothy Franson20Leslie M Hanrahan21Medical Center, University of California San Diego, La Jolla, California, USAMedicine, Allegheny Health Network, Pittsburgh, Pennsylvania, USAEMD Serono Research and Development Institute, Billerica, Massachusetts, USARheumatology, Monash University, Clayton, Victoria, AustraliaInternal Medicine/Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USAMedicine, Brigham and Women's Hospital, Boston, Massachusetts, USAResearch, Lupus Foundation of America Inc, Washington, District of Columbia, USAPediatrics, Duke University Medical Center, Durham, North Carolina, USACenter for the Study of Drug Development, Tufts University School of Medicine, Boston, Massachusetts, USALupus and Allied Diseases Association, Inc, Verona, New York, USACenter for the Study of Drug Development, Tufts University School of Medicine, Boston, Massachusetts, USAGlaxoSmithKline USA, Philadelphia, Pennsylvania, USAAutoimmune and Rare Disease Division, Mallinckrodt Pharmaceuticals Specialty Brands, Bedminster, New Jersey, USAFaegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USAFaegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USAAurinia Pharmaceuticals Inc, Victoria, British Columbia, CanadaPatient Representative, Riverdale, Maryland, USAResearch, Lupus Foundation of America Inc, Washington, District of Columbia, USAPatient Representative, Richmond, Virginia, USAFaegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USAFaegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Indianapolis, Indiana, USAResearch, Lupus Foundation of America Inc, Washington, District of Columbia, USAThe 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.https://lupus.bmj.com/content/8/1/e000433.full |