I recently attended a workshop hosted by The Ida Institute in Skodsborg, Denmark. Ida is a non-profit organization whose mission is to develop and integrate person-centered care in hearing rehabilitation. Ida is funded by The Oticon Foundation and collaborated on this workshop with Hearing Loss Association of America, The Ear Foundation, and Action On Hearing Loss.
Since its inception in 2007, Ida has periodically brought together groups of audiologists and related professionals to better define what patient-centered care means and to develop strategies and tools that audiologists can use to implement patient-centered care in their own practices. In the past year, Ida began inviting people with hearing loss into these discussions — a wonderful idea!
The workshop I attended, called Partners in Hearing — Learning Together, contained a mix of people with hearing loss, leading audiologists and representatives of patient organizations. I was thrilled to participate and hope that Ida will continue to include the patient perspective in future workshops.
Sharing Different Views Builds Knowledge
Bringing different perspectives together made the meetings eye-opening for everyone. For example, audiologists are often surprised by how much hearing loss impacts all aspects of a person’s life, and how fraught it is with emotion for the person with hearing loss. Practitioners also sometimes underestimate the toll hearing loss has on not just the person with hearing loss, but the entire family. They sometimes forget that if one person in the family has hearing loss, the whole family has hearing loss.
On the other hand, I gained further insight into how audiologists approach hearing care — primarily driven by hard data and analytics rather than softer things like patient commentary and emotions. This is not because audiologists are cold-hearted. Hardly. It is because that is how they are trained. Patient-centered care aims to push audiologists beyond this empirical bias, bringing patient and practitioner together in partnership to create better hearing outcomes. This is exactly what occurred at the workshop.
Co-Creation Sparks New Ideas
It was a whirlwind two days filled with inspiring presentations, creation games, breakout sessions and hard work. While initially the approximately 20 attendees worked together to define the focus of the activities, we quickly broke into smaller groups to dive deeper into five topics: (1) Peer-to-peer support, (2) Family and Friends (3) Empowerment, (4) Journey planning and (5) Workplace.
Each small group contained at least one audiologist, at least one person with hearing loss and at least one representative from a patient support organization so all views were included. The group’s task was to develop the initial framework for a practical tool related to the topic area. The goal is that these tools will one day be available for patient use through audiologists and also on-line. I chose the Family and Friends working group.
A Tool To Navigate Hearing Loss With Family & Friends
I know firsthand how difficult it can be to navigate hearing loss with family & friends. Not only do we need to continually educate them about our hearing issues and how they can best help us hear — it is not easy to understand hearing loss until you have lived it — but we must also learn how to negotiate and resolve conflict in the family/friend group related to speech patterns, seating arrangements and other everyday challenges. A tool for resolving these issue would be very useful.
My group developed a conversation guide in the form of a game. The players (family members or group of friends) begin by choosing a situation card. Examples include watching TV, family dinner, going to the movies, or dining out. The list of possible situations is endless so the game would also include blank cards for write-ins.
To play, the group would follow the structured prompts so that each person had a chance to share her emotions about the situation and provide her thoughts. The group would then brainstorm possible behavioral changes and or technology fixes to improve the situation, hopefully for everyone.
The format ensured that everyone in the discussion had a chance to share the same type of information and that each person’s point of view was considered in the solution. Since emotions are often difficult to verbalize calmly, emoji cards would be used instead of words — each person selecting one to represent how the situation made him feel.
To complete the game, the group fills out a solution card that details the decisions they made, the behavioral changes or technology solutions planned and any follow-up items. The card could be displayed in the home for future reference. A second card could be shared with the person’s audiologist to get input and suggestions from him. This feedback loop from home to audiologist, and back again, is an important part of patient-centered care.
At the workshop, we role-played a discussion about TV watching for the broader group. Mom didn’t hear well and wanted captions on all the time. The teenage daughter thought they were distracting when watching movies, while the school-aged son didn’t like how they covered the scores when watching sports. Dad didn’t feel strongly either way.
Everyone chose their emojis to express how they felt, talked about the situation and brainstormed a possible compromise — using captions for everything but sporting events, where Mom would use a different technology to make sure she could still enjoy the game. She was going to ask her audiologist for some suggestions.
Not all situations are this cut and dry, but a tool like this would provide a framework for calm discussions, no matter the hearing loss topic, and create a good excuse to bring people to the negotiation table, which is often half the battle. More work is needed to turn this concept into a usable and practical tool, so please share your ideas in the comments. I hope to stay involved in its further development.
Readers, would you try a game like this with your family or friends?