CIICA News Advocacy Resources

Cochlear Implants and Deafness: A Global Case Study to increase policy awareness and action on an under-resourced health issue.

We are delighted to share with you that a study of the development of CIICA (Cochlear Implant International Community of Action) as an international health network has been published by the International Journal of Audiology (IJA) at https://www.tandfonline.com/doi/full/10.1080/14992027.2023.2231634(Paywall). The paper places the development of CIICA in the context of other health networks and provides some lessons to be learned in how to establish health networks. It also reviews the research with users of CI and other stakeholders which led to CIICA’s establishment, develops some general learning about best practices in advocacy and provides evidence of the early impact of CIICA as a health network.

Many of you have taken part in either the research or our activities and we at CIICA are really grateful for your support, without which the establishment of this growing network in over 60 countries would not have taken place.

The IJA is an internationally respected journal and this will help spread the news of CIICA’s work and impact even more widely.

We would of course like you to promote the paper via the public (paywall) link. With many thanks again for all your support for CIICA, and we look forward to our future developments

Patient advocates in this field are the best conveyors of messages around the impact and severity of not addressing hearing loss and the benefits of taking action. From a public health perspective messaging about access to communication and the right to be able to hear resonates well within a human rights framework and offers an important basis for network development and building coalitions between groups with different circumstances.

Lamb, B, Visiting Professor, University of Derby, UK (Corresponding Author). brian.publicaffairs@gmail.com

Archbold S, CIICA, UK. sue.archbold@outlook.com

Zheng Yen Ng, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. zhengyen.ng@uq.net.au

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CIICA News Advocacy Resources

LAUNCH OF THE ADULT LIVING GUIDELINES!

Download CIICA’s summary of the Living Guidelines and use them for your advocacy activities.

Less than 1 in 10 of those who are deaf and could benefit from a cochlear implant (CI) have access globally. CIICA was delighted that our Chair Leo De Raeve was Co-Chair of The Task Force and to provide the CI user and family voice to the Living Guidelines Project through our Conversations. The project has developed evidence based living practice guidelines that can be adapted and adopted in country, in order to optimise the lifelong care for adults eligible for CI. These guidelines have been painstakingly developed through a systematic review by a dedicated team of researchers, audiologists, clinicians, and cochlear implant users, bridging the gaps between cutting-edge science, real-world application, and the lived experiences of CI users.

It is hoped the Living Guidelines for adult cochlear implantation will help at addressing the needs of adults experiencing hearing loss and provide a comprehensive roadmap towards cochlear implantation. Download the full Recommendations here – PDF

The Recommendations and Good Practice Statements

Hearing, Screening and Assessment
Referral (for hearing healthcare evaluation/management)
Specialist Evaluation
Surgery
Rehabilitation
Patient Outcomes and Measures

You can find more about the process of development and the complete Recommendations at https://adulthearing.com/standards-of-care/

Lee Schoushkoff, CEO of the Pindrop Foundation says, “As we continue championing hearing restoration advancements, the Living Guidelines for Adult Cochlear Implantation will be a vital resource in helping to address the crucial and significant unmet need in adults who are potential candidates for cochlear implants. We hope the Living Guidelines will pave the way for better knowledge dissemination, informed decision-making, and streamlined implantation procedures, ultimately promoting healthier, more fulfilling lives for adults experiencing hearing loss.”

Leo De Raeve, Chair of the Cochlear Implant International Community of Action (CIICA) and Co-Chair of The Task Force says, “The Living Guidelines are essential in advocacy work for cochlear implants in adults. They were developed through a systematic literature review and the involvement of users and families through CIICA. The Living Guidelines are essential to increase awareness, access, provision, outcomes, and lifelong aftercare and can be seen as a guide for advocacy to improve the experience and usefulness of cochlear implants for adults. I was delighted for CIICA to be involved in the project and look forward to using them globally to change CI services.”

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Nordic Declaration on Adult Cochlear Implantation

This image has an empty alt attribute; its file name is nordic.png

On World Hearing Day, 2022 we are delighted to share the Nordic Declaration on Adult Cochlear implantation : IMPROVING ACCESS TO COCHLEAR IMPLANTS FOR ADULTS.

Only one in ten have access to life-changing cochlear implantation.

Patient organisations in all Nordic countries want to change this and have therefore joined forces to formulate a declaration to be used to politicians and other key stakeholders.

This declaration focuses on adults over 18 years with severe to profound hearing loss, of over 65dB⁷:

All adults with severe to profound hearing loss should be eligible to be evaluated for CI’s.

Professionals who see those with Hearing Loss must have up to date information and guidelines for when and how to refer patients to CI teams.

For adults eligible for CI’s, access to assessment and treatment should be provided without any unnecessary delay.

Established indications and guidelines should be matched with adequate resources and funding.

Adults with severe to profound hearing loss should get access to optimal hearing care in both ears, including bilateral implants.

CI is a lifelong treatment.
- For the severe to profound hearing-impaired every technology improvement counts. Hence regularly updating to the latest technology is required, with a minimum replacement every five years.
- Consumables such as batteries, coils, remote controls, swimming kit for CIs, activation of telecoil, BT/streamers and microphone filters should be funded

As a long-term goal adult screening should be introduced routinely from the age of 50 years as per the WHO recommendations for adult screening: (WHO, Hearing Screening handbook, 2021).

By accepting and committing to the declaration, the Nordic region will be set to lead the world in providing comprehensive, sensible and fair cochlear implant provision for adults. Cochlear implants are life-changing sound investments, restoring good hearing to most severely and profoundly deaf adults who strive to hear, comments Robert Mandara, VP EURO-CIU, Finland
DOWN LOAD FILE HERE:

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HLAA survey on hearing loss and the pandemic

The Hearing Loss Association of America and Cochlear survey highlights COVID-19’s impact on the community of people with hearing loss in the U.S., including hearing and mental health-related implications.

Nearly half of those with hearing loss noticed impacts to other aspects of their health during the pandemic including increased anxiety, isolation and loneliness.
70% are more aware of their hearing loss due to the pandemic; nearly half are more eager to explore hearing loss treatment options.
95% of respondents reported that the use of face coverings impacted their ability to communicate
68% increased their use of technology to communicate
87% of hearing health care providers reported seeing increased signs of loneliness or isolation since the pandemic began.

This is according to a new survey conducted by the Hearing Loss Association of America (HLAA) in partnership with Cochlear Limited. Hearing loss is an invisible disease that affects almost 50 million Americans. The online survey of 1,399 participants sought to find out the pandemic’s impact on those in the hearing loss community, including individuals with hearing loss, their loved ones and their hearing health care professionals.

Have a look at HLAA Cochlear Pandemic Survey – Hearing Loss Association of America

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CIICA and EUROCIU launch new resource: WHY HEARING WELL MATTERS FOR HEALTHY AGEING

Healthy Ageing is linked to addressing hearing loss

Download here and share!

The Cochlear Implant International Community of Action (CIICA) with EUROCIU today (1 December 2021) launched a new briefing on how addressing hearing loss could help support healthy ageing by mitigating against the effects of cognitive decline and dementia. Reviewing recent research the briefing concludes that early intervention in the form of using hearing aids could mitigate the progression of cognitive decline and possibly dementia in older people.

It also reviewed growing evidence which points towards Cochlear Implants (CI) having the potential to arrest cognitive decline for many CI recipients. This in turn suggests that Cochlear Implants, and other hearing instruments, combined with appropriate rehabilitation, could positively impact on the progression of dementia while not necessarily being able to reverse it.

Leo De Raeve, Acting Chair of CIICA comments:

During the last decade, the relationship between hearing loss, cognitive decline and dementia has become clearer. This document brings together the recently published evidence related to the impact of hearing loss on cognition, of hearing technology, of not addressing hearing loss and dementia and offers several suggestions for action. Not only for professionals in the field of hearing care, but also for users’ associations (such as EURO-CIU) and advocacy groups (such as CIICA), this is a very valuable document which can support them in their actions.

Teresa Amat, President of EUROCIU says:

This topic has concerned us for some time and we wanted to pursue it for our members. Thanks to CIICA and EURO-CIU collaboration we have this strong document which brings all the evidence together to make the case for addressing hearing care and preventing hearing loss as well as invest in hearing technology. This is a must for all countries, administrations and organizations interested in hearing care and ageing well.

The authors conclude:

“While future research is needed to better evaluate the mechanisms, hearing loss is the most important potentially reversible risk factor for dementia. (WHO, 2021; Livingston, 2020). Professionals, Health Authorities and those with hearing loss should be aware of this association. If we can mitigate the onset or effects of dementia through addressing hearing loss early this could make a large impact on reducing the overall costs associated with dementia and the burden on caregivers and society. “

Download the resource and share with your colleagues and members!

CIICA-AND-EUROCIU-WHY-HEARING-WELL-MATTERS Download

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WHO launches Hearing Screening: Considerations for Implementation

The World report on hearing recommends that WHO Member States take urgent and evidence-based policy action to prevent, identify and rehabilitate hearing loss. Screening for hearing loss and ear diseases at specific time points forms an important part of this strategy.

HEARING screening: considerations for implementation builds on the recommendations made in the World report on hearing. It aims to provide Member States with technical guidance for establishing evidence-based programmes for hearing screening in different target age-groups and to facilitate early interventions for ear diseases and hearing loss in:

newborns and infants
schoolchildren
older people

Screening was identified as vital to our network members and the World Health Organisation launched this handbook on screening this week. Three more webinars will be available to share more information about each area. To register go here: Launch of HEARING screening: considerations for recommendations (who.int)

These are all vital issues for the CIICA network wherever you are. WHO hope it inspires hearing screening programmes to facilitate early intervention to address hearing loss.

Go to Hearing screening: considerations for implementation (who.int) to download the document which provides information and evidence to establish screening programmes.

More information at www.ciicanet.org/resources.

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Anniversary of the International Consensus Statements!

The Anniversary of the publication of the International Consensus Statements on Adult Cochlear Implantation is marked by the publication of Landmark – 12months on. There has been an amazing amount of activity to share that has taken place globally – raising the issue of adult CI during what has been a challenging time globally. Read the fascinating and encouraging summary of the activity of which CIICA has been a part….ICP 12 months in review (flippingbook.com)

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UK annual CI update: 2020-2021 data now available!

Every year BCIG asks UK cochlear implant centre coordinators to share the number of new patients who have received cochlear implants, and the number of people with cochlear implants that they look after. Thanks to all the centre coordinators for sharing their data. In the UK from 1-4-20 to 31-3-21, 848 new people received cochlear implants. Lower of course than our usual annual figure, but great to see that so many people did get to benefit from a CI, despite the pandemic. You can also see the figures over the years with the trends over time which is really helpful. See the full figures here:

https://www.bcig.org.uk/wp-content/uploads/2021/08/2-8-21-BCIG-CI-data.pdf

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