"It gives me confidence and value. When working as a deaf person these were constantly undermined”. Evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group to capture the perspectives of the group and of the researchers - three years on.
This paper evaluates the three-year impact of the All_Ears@UoS patient and public involvement group through mixed-methods feedback from members and researchers, highlighting its success in fostering partnership and confidence while identifying key areas for improvement such as training, scheduling flexibility, and reimbursement processes.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Imagine science as a giant, bustling kitchen where chefs (researchers) are trying to cook up the perfect meal to cure diseases or fix health problems. For a long time, these chefs worked alone, tasting their own soups and guessing what the diners might actually want. But recently, the kitchen has changed. Now, the most successful chefs invite the diners—the people who will actually eat the food—right into the kitchen to help plan the menu, taste the ingredients, and even stir the pot. This is called Patient and Public Involvement and Engagement (PPIE). It's not just about asking people what they think; it's about building a partnership where the people with the "lived experience" of a condition work side-by-side with scientists to make sure the research actually matters to real life.
In the world of hearing, this is a big deal. Millions of people live with hearing loss or are deaf, but for a long time, they were often left out of the kitchen. They weren't just missing from the dining room; they were missing from the recipe book. This paper is about a specific group called All_Ears@UoS, a team of deaf and hard-of-hearing people who joined forces with scientists at the University of Southampton to shake up the menu. Three years after they started cooking together, the team decided to take a step back and ask: "Is this partnership working? Are we making a delicious meal, or is the soup too salty?" They wanted to know if the chefs felt they were learning, and if the diners felt their voices were actually being heard.
The Big Taste Test
Three years after setting up the All_Ears group, the researchers and the group members decided to hold a massive "taste test" to see how things were going. They didn't just guess; they handed out two different surveys—one for the scientists and one for the group members—to get a full picture of the flavor of their partnership. They used a special checklist called the UK Standards for Public Involvement as their measuring tape to see if they were hitting the right notes.
What the Group Members Said:
The people living with hearing loss reported that the group felt like a warm, friendly living room where they finally felt valued. One member put it perfectly: "It gives me confidence and value. When working as a deaf person these were constantly undermined." They loved the communication (both in meetings and via email) and felt the group was a safe space where everyone was treated equally. They felt like they were making a real difference, not just by helping with research, but by raising awareness in their local communities about hearing loss and cochlear implants.
However, the group also pointed out some burnt spots on the toast. They felt that training opportunities to learn new skills were a bit thin. They also complained about the reimbursement process (getting paid for their time) being too slow—sometimes taking eight weeks instead of a reasonable four. Finally, they wanted more flexibility. Most meetings were held in person during the day, which made it hard for students or people with jobs to join in. They suggested mixing in some online meetings to let more people participate.
What the Researchers Said:
The scientists were thrilled. They described the group as "invaluable," saying that having insights from people with hearing loss helped them design better studies that actually solved real-world problems. They felt that working with the group boosted their own confidence and gave their research a clear sense of purpose. They loved the diversity of the group, noting that it was hard to find such a wide range of voices elsewhere.
But even the happy chefs had some complaints. They felt that the University didn't shout loud enough about how important this kind of work was. They also wanted more resources and training to help them work better with the group. Like the group members, they mentioned that the meeting schedule was tricky; they wanted more frequent meetings and a more fixed schedule so they could plan their time better.
The Verdict
So, is the kitchen running well? Yes, but with a few tweaks needed.
The paper suggests that the All_Ears group is a huge success story. It has built a bridge between the deaf community and the research world, creating a space where both sides feel heard and respected. The "flavor" of the partnership has improved significantly since the first year, with more people feeling confident and included.
However, the paper doesn't claim the job is done. It suggests that to keep the meal delicious, the team needs to:
- Speed up the payment process so members don't feel undervalued.
- Offer more training so everyone feels equipped to contribute.
- Mix up the meeting times and formats (adding more online options) to welcome students and workers.
- Reach out to more groups, specifically young people and those who use sign language, who are still missing from the table.
The authors are careful to say that while they have made great progress, they are still learning. They aren't claiming to have solved every problem in hearing research, but they have proven that when you invite the diners into the kitchen, the food tastes much better for everyone. The next step is to use these findings to cook up an action plan that makes the group even more inclusive and effective in the years to come.
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