International Community of Stakeholders
Stakeholders play a vital role in optimising the care for adults eligible for CI. The Co-development of guidance and guidelines with hearing partners is key to ensuring the process reflects real world settings, as well as the facilitators to overcoming the barriers in the patient journey.
This process will see the inclusive involvement of key stakeholders from subject matter experts to primary care networks across the globe. Conducting efficient and meaningful consultation with key stakeholders will assist to better understand the issues hindering these processes.
The project will have two phases. Phase I will concentrate on refining the guideline scope, target audience and key questions. The second phase of the process will see the guideline framework progress through to guideline creation and communication.
CI users are integral to the process and will be engaged throughout. One key mechanism to do this will be through the Cochlear Implant international Community of Action (CIICA), representing cochlear implant users, other consumer organisations and professional societies to ensure the perspectives of adults with hearing loss are included in the process.
These members will assist and provide input into the development of evidence based and consensus-based recommendations.
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The Task Force will work to translate the evidence into recommendations for the real world. Once the Task Force is aligned and the guidelines and guidance created, there will be a need to inform best evidence patient care to a Broader Stakeholder group and the International Hearing Care Community. This group will consist of those involved in the pathways to care, including primary care specialists, referrers and those linked to the patient pathway. It will also include advocacy organisations. This stage in the process will be crucial to the overall understanding and adoption of the recommendations into clinical practice.
Description of stakeholder groups
Task Force (Scientific Committee): Led by three Co-Chairs, the Task Force will create a global Scientific Committeesupporting the effective development and subsequent dissemination of a set of accurate, consistent and usable guidelines.
Meet the Task Force
Co-chairs
Meredith Holcomb
United States of America
Director, Hearing Implant Program, University of Miami, Miller School of Medicine, Department of Otolaryngology
Dr Holcomb joined the University of Miami in 2019 as the Director of Cochlear Implants. She received her AuD from the University of North Carolina at Chapel Hill in 2006. She was employed at the Medical University of South Carolina from 2006-2019 where she primarily worked with adult and pediatric cochlear implants. As well, she was the 2016 recipient of the “Outstanding Clinician Award” at MUSC.
Leo De Raeve
Belgium
Acting Chair of CIICA (Cochlear Implant International Community of Action), Scientific Advisor of EURO-CIU (European Association of Cochlear Implant Users) and Director of ONICI (Independent Information and Research Center on Cochlear Implantation)
PhD De Raeve has Doctor in Medical Sciences, psychologist and teacher of the deaf. He has more than 35 years of experience in working with deaf children and their families and in deaf education and rehabilitation at KIDS Royal School for the Deaf in Hasselt (Belgium).
Since 2002, he is Director of the Independent Information and Research Center on Cochlear Implants (ONICI).
In 2008 he became Scientific Advisor of the European Users Association of Cochlear Implant Users called “EURO-CIU”, and in 2020 he became Acting Chair of the CIICA steering committee.
Ángel Ramos Macías
Spain
Professor, University of Las Palmas. School of Medicine, Department of Otolaryngology – Head and Neck Surgery and Maxillofacial
Prof. Dr. Macías received his Doctor of Medicine and Surgery from the University of Salamanca in 1990 and has over 30 years experience as a Specialist in Otorhinolaryngology. He is currently the Head and Director of the Department of Otolaryngology at the Insular University Hospital of Gran Canaria, as well as a Professor at the University of Las Palmas.
Prof. Dr. Marcías also holds the positions of Secretary General of the Ibero-American Group of Cochlear Implants and Related Sciences, and the President of the National Otology Comission. Spanish Society of ENT (SEORL).
Meet the Task Force Members
The Co-Chairs are supported by Task Force Members comprised of experts in the field of CI use, including recipients, audiologists and ear, nose and throat specialists from across 20 countries.
Hamid Benghalem
Morocco
Mohamed ElShazly
Egypt
Darja Pajk
Slovenia
Shakeel Saeed
United Kingdom
Laura Turton
United Kingdom
Timo Stöver
Germany
Ulrich Hoppe
Germany
Åsa Skagerstrand
Sweden
Domenico Cuda
Italy
Stefano Berrettini
Italy
Bernard Fraysse
France
Michal Luntz
Israel
Catherine Birman
Australia
Pádraig Kitterick
Australia
Tatsuya Yamasoba
Japan
Bamini Gopinath
Australia
Cath McMahon
Australia
Claire Iseli
Australia
Mohan Kameswaran
India
Neelam Vaid
India
Hao WU
China
Jenny Loo
Singapore
Holly Teagle
New Zealand
Seung Ha Oh
South Korea
Katie Neal
Australia
Peter Wolnizer
Australia
Nina Quinn
Australia
Esther Vivas
United States of America
Jennifer Maw
United States of America
Alejandra Ullauri
United States of America
Paul Mick
Canada
Lise Hamlin
United States of America
Sarah Sydlowski
United States of America
Matthew Carlson
United States of America
Erin Miller
United States of America
Regina Presley
United States of America
Alecia Spoor
United States of America
Craig Buchman
United States of America
Oliver Adunka
United States of America
Maura Cosetti
United States of America
Richard Gurgel
United States of America
Natalie Morog
Canada
Alejandro Rivas
United States of America
Jose Alberto Prieto
Colombia
Federico diLella
Argentina
Ricardo Bento
Brazil
Task Force Representation
The Task Force brings together subject matter experts from organisations tasked with collaboratively developing living practice guidelines, to optimise the standard of care for adults eligible for cochlear implantation via an evidence based, real time repository under the governance of a coalition of the willing.
Member affiliations will extend to national and international organisations and a wide range of stakeholders including society representatives, speech language therapists, general practitioners (GPs), hearing aid specialists, audiologists, ear, nose and throat (ENT)/ENT GP, payer/policy, non-government organisations (NGOs), governmental agencies, academia, organisations implementing hearing care solutions within the community and most importantly patient representatives who represent the real world experience of those with severe to profound sensorineural hearing loss (SPSNHL).
Broader Stakeholder Consultations: Once the initial phase of guidelines creation is complete, a second phase of communication and implementation will commence. This phase will involve key subject matter experts and may include organisations, speciality bodies or a range of stakeholders defined by the Task Force. The goal for their involvement will be to obtain advice and feedback on recommendations or specific aspects of the Guidelines that require additional expert advice. Inclusion of additional stakeholders will ensure the recommendations are appropriate and increase buy-in and consensus on the final guideline recommendations. Stakeholder mapping will be carried out by the Task Force, to ensure a diverse group of stakeholders are identified from consumers and patient advocacy groups to GPs, hearing aid technicians, audiologists, payers, health economists and peak bodies.
Examples of other living guidelines from other allied health sectors can be found at this link. https://app.magicapp.org/
Contacts
For any enquiries on the living guidelines project, kindly contact the coordination team indicated below.
Coordination team:
Irene Deltetto, Director, Healthcare Strategy and Innovation, Health Technology Analysts
irene.deltetto@htanalysts.com.au
Colman Taylor, Chief Vision Officer, Health Technology Analysts
References
- Buchman CA, Gifford RH, Haynes DS, Lenarz T, O’Donoghue G, Adunka O, et al. Unilateral cochlear implants for severe, profound, or moderate sloping to profound bilateral sensorineural hearing loss: A systematic review and consensus statements. JAMA Otolaryngology–Head & Neck Surgery. 2020;146(10):942-53.
- Sorkin DL. Access to cochlear implantation. Taylor & Francis; 2013.
- ENT Referral Studies, Frost & Sullivan (2010); Cochlear Segmentation Study (2016); PBS ‘Brand Tracker for Professionals’ (CAM) (2017); Better Hearing Institute: MarkeTrak 9 (2015); Cochlear Country Team Intelligence.