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Priority setting partnership in childhood deafness and hearing loss

This project will help us understand what the priorities for childhood deafness and hearing loss research should be.

At the end of the project, we’ll draft a ‘Top Ten’ list of the most important questions researchers should be trying to answer about childhood deafness and hearing loss. This list will help organisations focus their health funding and research on topics that make the biggest difference.

How will this project be run?

The project is a collaboration between the National Deaf Children’s Society, the University of Manchester, Aston University, and Lancaster University, with additional funding from PF Charitable Trust. The team will follow the James Lind Alliance’s well-established process to find out what the research priorities are for people with direct experience of childhood deafness and hearing loss.

The first survey has now closed. The second survey will open in February 2025 and will be a chance to rank identified research questions in order of importance to you. 

What is the James Lind Alliance process?

The James Lind Alliance priority setting process has six stages to it, as outlined below:

  • Stage 1: Identifying a range of stakeholders, including patients, carers and clinicians
  • Stage 2: Collecting initial priority questions via a survey
  • Stage 3: Refining questions by collating them and checking them against research evidence to identify ‘true’ uncertainties
  • Stage 4: Inviting stakeholders to prioritise the refined questions using a second survey
  • Stage 5: Gathering patients, cares and clinicians in a final workshop to prioritise, by consensus the top 10 unanswered research questions
  • Stage 6: The top 10 research priorities will be disseminated widely to patients, carers, clinicians, researchers, policymakers, patient organisations and research funders.

Find out more about the James Lind Alliance process by watching the video below or visiting their website.

https://youtube.com/embed/BGuTYf5iJQQ?rel=0&showinfo=0&enablejsapi=1&origin=https://www.ndcs.org.uk

An introduction to the James Lind Alliance Priority Setting Partnerships

Meet the team

Management group

  • Anisa Visram, co-lead
  • Amanda Hall, co-lead
  • Juliet Viney, parent co-applicant
  • Hannah Stewart, focus groups lead
  • Nahid Ahmad, James Lind Alliance adviser

You can contact the management group at: [email protected]

Steering group

  • Juliet Viney, parent member
  • Sam Lear, audiologist
  • Veronica Kennedy, audiovestibular physician
  • Ruth Crosby-Stewart, Teacher of the Deaf and educational audiologist
  • Martina Curtin, speech and language therapist
  • Aliyah Black, person with lived experience
  • Sheila Lundberg, Teacher of the Deaf

Partner organisations

Thanks to all our partner organisations for their support in running and promoting the priority setting partnership.

  • British Academy of Audiology (BAA)
  • British Association of Audiovestibular Physicians (BAAP)
  • British Association of Educational Audiologists (BAEA)
  • British Association of Teachers of the Deaf (BATOD)
  • British Society of Audiology (BSA)
  • Chloe’s and Sophie’s Special Ears Fund (CSSEF)
  • Ewing Foundation
  • Hear Together
  • National Sensory Impairment Partnership (NatSIP)
  • Royal College of Speech & Language Therapists (RCSLT)

If you would like to get involved as a partner organisation or would like more information about the project, please get in touch at [email protected].