WE NEED YOUR HELP. IT'S A TEAM EFFORT

We need everybody’s opinion, we need everybody’s help in mobilising support, to drive forward an agenda that is favourable, for hearing impaired patients, especially those for whom cochlear implantation may be appropriate. And who at the present time are denied that intervention.Globally, we all have to unite to do this work, and to make sure that the interventions for hearing impairment are more readily available, for the millions of people who at the present time are denied it.

Professor Gerard O’ Donoghue, steering committee member of the Consensus Delphi Process and Professor of Otology and Neurotology, University of Nottingham, UK.

ABOUT ADULT HEARING

Adult Hearing is a professional education platform that aims to increase awareness via the latest clinical evidence to reach an agreed standard of care for adults with hearing loss.

The site is formed in collaboration with members of the Delphi Consensus Group as well as the Consumer and Professional Advocacy Committee.

Purpose of Adult Hearing

Improve access to cochlear implants for people with hearing loss and educate and empower hearing health practitioners to identify and treat CI candidates.

Goals

  1. Provide an interface to keep professionals up-to-date with scientific information and best practice examples for treating adult hearing loss.
  2. Advance cochlear implant therapy as a sustainable counselling option, increasing the likelihood that a CI candidate will be evaluated by a specialist.
  3. Create an online platform to provide access to continuous learning opportunities and enable community engagement, leading to increased awareness and confidence in CI solutions.

THE DELPHI PANEL, STEERING COMMITTEE, AND CHAIR

The Delphi panel comprised clinical experts in cochlear implantation, from the fields of otology, audiology, and hearing science, who were to take part in the development of the consensus statements. The Chair of the Delphi panel was Professor Craig A Buchman (Washington University School of Medicine, St. Louis, MO, USA).

Four clinical experts were identified by the Chair to form the steering committee, while also being the first members of the Delphi panel:

  • Professor René H Gifford (Vanderbilt University Medical Center, Nashville, TN, USA);
  • Professor David Haynes (Vanderbilt University Medical Center, Nashville, TN, USA);
  • Professor Thomas Lenarz (Hannover Medical School, Hannover, Germany); and
  • Professor Gerard O’Donoghue (University of Nottingham and Nottingham University Hospitals NHS Trust, Nottingham, UK).

The steering committee was responsible for designing and finalising the Delphi consensus protocol, identifying candidates to complete the Delphi panel, and approving the Systematic Review areas of interest for the study.

All members of the steering committee and the Delphi panel, except the Chair, were able to vote in the consensus process. Voting on the draft consensus statements took place over three rounds.

Members of the Delphi Panel are as follows

  • Dr Oliver Adunka, Ohio State University, Columbus, OH, USA
  • Dr Allison Biever, AuD, Rocky Mountain Ear Center, Englewood, CO, USA
  • Professor Robert Briggs, The University of Melbourne; Royal Victorian Eye and Ear Hospital; Royal Melbourne Hospital, Australia
  • Dr Matthew Carlson, Mayo Clinic School of Medicine, Rochester, MN, USA
  • Dr Pu Dai, PLA General Hospital, Beijing, China
  • Professor Colin Driscoll, Mayo Clinic School of Medicine, Rochester, MN, USA
  • Dr Howard Francis, Duke University School of Medicine, Durham, NC, USA
  • Professor Bruce Gantz, University of Iowa Health Care, Iowa City, IA, USA
  • Dr Richard Gurgel, University of Utah Hospitals and Clinics, Salt Lake City, UT, USA
  • Dr Marlan Hansen, The University of Iowa, Iowa City, IA, USA
  • Associate Professor Meredith Holcomb, University of Miami, FL, USA
  • Dr Eva Karltorp, Karolinska University Hospital, Stockholm, Sweden
  • Professor Milind Kirtane, Seth GS Medical College and KEM Hospital, Parel, Mumbai, India
  • Ms Jannine Larky, Stanford University School of Medicine, CA, USA
  • Professor Emmanuel Mylanus, Radboud University Medical Center, Nijmegen, Netherlands
  • Dr Thomas Roland, New York University School of Medicine, New York, NY, USA
  • Professor Shakeel Saeed, University College Hospital; National Hospital for Neurology and Neurosurgery; Royal National Throat, Nose and Ear Hospital, London, UK
  • Professor Henryk Skarzynski, Institute of Physiology and Pathology of Hearing, Warsaw, Poland
  • Professor Piotr Skarzynski, Department of Teleaudiology and Screening, World Hearing Center, Institute of Physiology and Pathology of Hearing, Warsaw; Department of Heart Failure and Cardiac Rehabilitation, Medical University of Warsaw; Institute of Sensory Organs, Kajetany, Poland
  • Dr Mark Syms, Arizona Hearing Center, Phoenix, AZ, USA
  • Associate Professor Holly Teagle, University of Auckland, New Zealand
  • Professor Paul Van De Heyning, Antwerp University Hospital, University of Antwerp, Edegem, Belgium
  • Professor Christophe Vincent, Centre Hospitalier Regional, Universitaire de Lille, France
  • Professor Hao Wu, 9th People’s Hospital, Jiao Tong University School of Medicine, Shanghai, China
  • Professor Tatsuya Yamasoba, The University of Tokyo Hospital, Japan
  • Professor Terry Zwolan, University of Michigan, Ann Arbor, MI, USA

THE IMPORTANCE OF ADVOCACY

Robert Mandara, 1st Vice President from the European Association of Cochlear Implant Users (EURO-CIU), talks to us about his journey with hearing loss, EURO-CIU’s function, as well as their position as it relates to bilateral cochlear implantation

Listen to Leo De Raeve, Director ONICI and Scientific Adviser to the board of European Association of Cochlear Implant Users (EUROCIU) discuss the Consumer and Professional Advocacy Committee and its objectives.

Barbara Kelley, Executive Director of the Hearing Loss Association of America, explains the role of HLAA and the significance of the Consensus paper in addressing hearing loss in adults.

Listen to Leo De Raeve, one of the Consumer and Professional Advocacy Committee members, discuss the EUROCIU and its objectives.

Barbara Kelley, Executive Director of the Hearing Loss Association of America explains the function and purpose of the HLAA as well as some of the challenges faced currently within the community.

Professor Milan Profant explains the purpose of IFOS and talks through the challenges and necessary steps required to address change. Professor Profant is Secretary General of the International Federation of Otorhinolaryngological Societies (IFOS) and based at the University Hospital in Bratislava, Slovakia.

The ACI Alliance Advocacy Toolkit

COCHLEAR IMPLANT INTERNATIONAL COMMUNITY OF ACTION (CIICA)

What is CIICA?

We are delighted to welcome the launch of the Cochlear Implant (CI) International Community of Action (CIICA) – a new and innovative community of organisations, individuals and experts sharing the vision of increasing access to cochlear implants, and lifelong support for those who benefit from them.

The issue addressed by CIICA is the massive gap between those who could potentially benefit from CIs and those who have them: only 5-10% of those in developed nations with severe to profound deafness and hearing loss have a CI, in spite of the benefits to individual and society being well-proven, including the cost-effectiveness.

To address the gap in CI provision and long-term support, CIICA provides a new way of working for CI advocacy groups, bringing them together with opportunities to exploit the synergy between them.

What is the aim of CIICA?

Led by users and family groups, working closely with professional organisations, experts in the field of CI and other stakeholders, CIICA will:

  • Increase access to the provision of CI and lifelong services globally
  • Develop a global community of CI advocacy groups, with opportunities to share activities and resources and collaborate to strengthen the user and family voice
  • Provide CI advocates with the tools for change they need to increase access to CI services

Learn more at www.ciicanet.org

CIICA Advocacy Briefing: June

Adult Cochlear Implant Advocacy: Implications of the World Report on Hearing, 2021

UPCOMING CIICA EVENTS

There are no upcoming events at this time.

PAST CIICA EVENTS

CIICA CONVERSATION: Adults with CI: Managing Listening and Communication Effort

This conversation for adults with CI, follows the theme of Listening and Communication Effort which was brought up in the previous conversation.

CIICA CONVERSATION: Adults with CI talking about the Living Guidelines

This lively CIICA Conversation, led by Leo De Raeve, provided adult CI users from across the globe with a great opportunity to comment on the Living Guidelines Project.

CIICA LIVE: The Global Barriers to CI for children

What are the global barriers to CI in children – and to the services they require? A lively session revealed not only the challenges but the passion which individuals and groups bring to the issues – chaired by Eddie Mukaaya of Uganda.

CIICA CONVERSATION FOR 18-30’s with CI: How do CI influence our human connections?

Young CI users from 5 countries discussed some of the issues important to them. How do CI influence our human connections? Led by Bowen Tang, President IFHOHYP, CI user and based in Canada.

CIICA CONVERSATION: Adult Services after CI: Reimagining Rehabilitation

Adult CI users discussed challenges and recommendations about post-implant services. What would they like to see? 13 CI users from 12 countries joined led by Kris English, Lise Hamlin and Ali Maninelli.

CIICA LIVE: The Impact of the Pandemic on CI users, Families and Services

On the eve of International CI day and our first birthday the topic was the Global Impact of the Pandemic on CI users, families and services.   Our global network shared their experiences of the huge impact of the pandemic.

CIICA CONVERSATION: Life with CI: 18-30’s in Conversation: Together we can shape our future

This CIICA CONVERSATION about life with CI for 18-30 year olds was lively with 11 young adults from 9 countries sharing those issues that are important to them. The conversation was facilitated by Bowen Tang, himself an implant user.

SECOND CIICA CONVERSATION: Our experiences of Telepractice. What have we learned?

This Conversation, led by Anita Grover and Helen Cullington explored our experiences of Telepractice and what we have learned, with contributions by Noel Kenely and Candice Gray from Perth, Australia.

FIRST CIICA CONVERSATION: The impact of the pandemic on CI services: read the summary!

This CIICA conversation discussed the impact of the pandemic on services – considering the issues faced by users and those who deliver services and led by Anita Grover, CEO of AVUK, and an implant user herself.

CIICA LIVE: Adult CI Rehabilitation: What is needed?

Adult CI Rehabilitation, is an often neglected area. Adult CI users discussed their experiences, what is provided and what is needed. Clearly the term Rehabilitation doesn’t describe it!

CIICA LIVE: CI Funding – Challenges and Priorities

We explored the evidence for the cost-effective arguments for CI, and funding CI provision globally by advocacy groups. 122 registrants from 34 countries shared the energising presentations.

CIICA LIVE: CI Advocacy: how do we do it?

“Generating a collective conscience.” Joan Zamora, Spain Over 100 registered from 32 countries exploring how effective user led advocacy can change CI provision.

CIICA LIVE: The World Hearing Report: what’s next for CI advocacy?

We were delighted that our first CIICA LIVE session on 5 May attracted 145 registrants from 30 countries and provoked much discussion and feedback!

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