Tapping into people’s lived experience with hearing loss

Dr. Caitlin Barr shares 5 ways this approach benefits our services and what to consider when embedding lived experience in your work.

Hearing health and well-being do not start nor end in the audiology clinic. That is not to say that hearing professionals and technical interventions do not have an important role; rather, as clinicians, we must look at the whole person and their whole-of-life experiences from the perspective of people living it.

Perhaps you have come across the colloquial saying, “nothing for me, without me”?

This saying presents person-centered care in its simplest form. People who live with, and are directly impacted by, health conditions or who are disabled by the way society, or a system imposes barriers, are the experts.

But, how often do clinicians or service managers take the time to ask consumers about their lives? And listen? Outside clinical history taking (which is infrequently narrative based in audiology) or testimonials, few clinics embed lived experience stories in their service improvement framework.

I recently discussed this topic with a member of my organization who is a consumer advocate; she said: “You’re asking me about my experience with the audiologist – but to be honest, my issue is how well I hear at work. If you want to talk about my well-being, then let’s talk about my life.”

5 ways asking people about their lived experience can benefit our services

People with lived experience must be at the table when decisions are made about them. Lived experience narratives are evidenced to benefit services and society in many ways, including:

  1. Service quality improvement and outcomes1
  2. Design of new interventions or processes2
  3. Improved health outcomes3
  4. Education of key skills to health professionals4
  5. Improved policy decisions5,6

And importantly, people with lived experience also personally benefit from being enabled and involved.7

Why previous research didn’t provide the whole picture

While in audiology, research into understanding lived experience has grown, a limitation is that much of this academic understanding about living with hearing loss is viewed and interpreted through the lens of the often audiologically-trained researcher where the person with lived experience is the research subject, not the collaborator.

Moreover, this research is conducted and interpreted by researcher audiologists, educators, or hearing instrument designers – perspectives that are embedded in the hearing care system.

This lens is a valid one, but it is not the whole picture. From asking the right questions to interpreting results through alternative lenses, there is an opportunity for the us all to gain a deeper understanding of lived experience by including people with hearing loss across all dimensions of our work to get the best outcomes for people with hearing loss.

No matter your area of work, you can embed lived experience of hearing loss

  • As a clinician or working in a clinical space, people with lived experience are well-placed to provide information about health services and system performance in a way that goes beyond measuring outcomes.

  • Unlike data commonly used as evidence in health services and systems quality improvement, narratives from people who are experiencing a condition and who have experienced the ‘system’, can provide an unparalleled insight into the whole-person, whole-system experience.
  • In outcomes and process analysis (surveys, wait times, health changes), we learn answers to questions that matter to us or the system.

    In contrast, lived experience stories offer information about what matters to the individual as they experience the system – what happens and what this means in people’s real worlds (the place where hearing loss intersects with hearing health and well-being).
  • Embedding lived experience narratives in the clinical audiology system means we are able to focus on whole-of-person care, not just the part of the person relevant to that health service, or the part of the service of interest to the provider.

Imagine if you could implement a ‘consumer partnership model’

In this model, your clinic could run regular and purposeful events with a group of their clients and members of the public with hearing loss to co-design and problem solve service delivery issues and opportunities.

Not only does this model lead to exciting clinical innovations, the clinicians are connected to the people they serve, and people with lived experience are invested in advocating for themselves and the service provider.

That is just one example. Across the world there are many examples of embedding lived experience done well. If you’d like to read more about them, read more here.

If you’re thinking ‘what I can I do tomorrow?’,

Five things to consider in embedding lived experience in your work

  1. Find lived experience partners. Finding the right people can be hard. You don’t just want your clients who love your work – they may not challenge you to change!

  2. Invest in educating and empowering your lived experience partners. Remember that consumers and the public do not exist to serve us; but we exist to serve them. If you want people with lived experience to partner with you, invest in their training and support. You may need to seek out training for yourself to ensure that the power imbalance between you and the public is minimized,

  3. Partners are not ‘check or confirmers’, they work alongside. Core to this concept is that people with lived experience are experts with their own ideas and experiences. By including them from the start or in an ongoing fashion ensures they aren’t just rubber stamping your ideas and reinforcing your lens and expertise.

  4. Data doesn’t have to be numbers. In instances where you’re not making big changes to your practice you may not need a formal methodology. Consider building data from interactions with people with lived experience. Considering blocking out times in your diary when you invite clients or the public to tell you and your staff about their lives – not for clinical purposes, but so you can listen!

  5. Be humble and ready to change. It may be the case that you learn something that challenges your assumptions and the way you ‘do things around here’. If this happens, congratulations to you as it means you’ve provided a safe environment for lived experience to be valued. Take this opportunity to change as a humble gift and make changes.

After more than 20 years and a century of conversation around moving from treating hearing loss as a biomedical condition, to a critical factor impact on health and well-being – it is time to ensure that the conversation is with and alongside people with lived experience.

Want to know more? Visit Soundfair and the full article.

You can also read more in the IJA special supplement dedicated to well-being topics.


  1. Luxford, K. (2012). What does the patient know about quality?: Oxford University Press.
  2. Donetto, S., Tsianakas, V. & Robert, G. (2014). Using Experience-based Co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions, London: King’s College London.
  3. Luxford, K. & Sutton, S. (2014). How does patient experience fit into the overall healthcare picture?, Patient Experience Journal, 1(1), 20-27.
  4. Charon, R. (2008). Narrative medicine: Honoring the stories of illness. Oxford University Press.
  5. Robert, G. & Cornwell, J. (2013). Rethinking policy approaches to measuring and improving patient experience, Journal of Health Services Research & Policy, 18(2), 67-69.
  6. Matthews, N. & Sunderland, N. (2017). Digital storytelling in health and social policy: Listening to marginalised voices. Taylor & Francis.
  7. Palmer, D., Williams, L., White, S., Chenga, C., Calabria, V., Branch, D., Arundal, S., Storer, L., Ash, C. & Cuthill, C. (2009).  No one knows like we do’-the narratives of mental health service users trained as researchers, Journal of Public Mental Health, 8(4), 18.