Working Together to Develop the Research of Treatments for Single-Sided Deafness

In September 2019, I wrote a blog post about CROSSSD, an international research project currently being undertaken by audiologist and researcher, Roulla Katiri. The study is supported by the National Institute for Health Research (NIHR), Nottingham Biomedical Research Centre (BRC), and aims to develop the research of treatments for single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

Understanding Single-Sided Deafness

For people like me, having only one hearing ear brings unique challenges, particularly understanding speech in noisy environments and the inability to identify the location of a sound source.

Those affected by SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. The psychological and social issues connected to SSD include difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem.

Yet, despite the impact SSD can have on daily life, it is a condition for which not all healthcare systems and institutions recognise the need for intervention.

The Purpose of the CROSSSD Study 

In the field of treating SSD, the things that should be measured when deciding if a hearing aid or an auditory implant is effective are termed outcomes.

Examples of outcomes are:

• Listening in complex situations:  The difficulty experienced when listening to a sound while separating it out from a background of other sounds
• Personal safety:  How your hearing loss affects your awareness of potential hazards and threats in your daily life (e.g. moving traffic, hazards at the workplace) and those you may not be able to see or hear (e.g. other people behind you)
• Impact on work:  The effect of your hearing loss or device on your ability to carry out work tasks or job roles, or advancing your career

Researchers don’t currently agree on what outcomes must always be assessed when developing treatments for SSD.

If all future studies measure the same outcomes, researchers will be able to compare and combine data meaning research can move forward faster.

The purpose of the CROSSSD study is to develop a Core Outcome Set (COS)—a list of outcomes which should be measured and reported as a minimum, in all studies—to help researchers decide whether a treatment works.

CROSSSD News Update

• In 2019, 300 participants of the CROSSSD study, from 29 countries completed 2 rounds of surveys where they voted for the outcome domains, they thought were the most important.
• From the original 49 outcome domain choices, 17 outcome domains were unanimously voted­—by all stakeholder groups taking part in the CROSSSD study—as critical and important to be included in a COS for research into treatments for SSD.

CROSSSD Online Consensus Meeting

On 7^th July 2020, I joined 23 international experts in SSD in an online consensus meeting where we discussed and decided what outcome measures should be in a COS for SSD interventions for adults.

To determine the most essential aspects of SSD for researchers to focus their studies on, we needed to consider each of the 17 outcome domains with the greatest number of votes; it was crucial to ensure the final COS would be short and achievable.

The COS will not restrict researchers in their choice of reported outcomes, but rather it will act as a base; researchers can choose and explore other outcomes as well.

Ensuring All Voices Were Heard

The Nottingham Biomedical Research Centre (BRC) believes that Patient and Public Involvement (PPI) is essential towards achieving meaningful clinical research. The associated PPI team have worked closely with the project leader from the inception of the study to help with planning the protocol and organising the consensus meeting.

The following participants joined the meeting, each offering a unique viewpoint:

• Healthcare users with SSD, who brought a focus to the ‘patient’ through explaining personal experiences of living with SSD.
• Healthcare professionals (audiology/ENT), who gave insight into the types of measurements researchers would most likely focus their research on when studying particular outcomes.
• Clinical researchers, who shared their knowledge about the more technical aspects of how outcome domains might be measured in future studies and the viability of a successful collection of meaningful data.
• Commercial representatives (of BAHA and cochlear implant companies), who shared their expertise of current SSD interventions.

Involving contributors from a diverse range of backgrounds meant that the COS would be relevant to everyone in each part of the process of the development and application of treatments for SSD.

Meeting in an Online Environment

The meeting was originally planned to take place in London in March 2020, but due to travel restrictions and social distancing measures imposed by the COVID-19 outbreak, it was decided to hold a virtual consensus meeting using Microsoft Teams.

A lot of preparation was necessary before the meeting, to help overcome some of the challenges of facing 22 strangers on a screen for the first time.

Participants were sent informative emails and documents to ensure familiarisation with the technology and the structure of the meeting. The week before the event, everyone was invited to an optional Coffee Morning—an opportunity to test the software and meet other participants of the consensus meeting.

My Experience of Taking Part in the Online Consensus Meeting

I feel there were both benefits and challenges of holding a consensus meeting online.

Benefits

One at a Time: Throughout the meeting, microphones were muted unless people were speaking. The ‘hands up’ function was used to make the facilitators aware that participants wanted to speak, and so it wasn’t possible to achieve a natural flowing discussion.

As someone with hearing loss, I actually found this beneficial; there were no overlapping voices and I was able to focus on just one person speaking at a time, without the background noise you may naturally have in a meeting (sound from air conditioning units, voices of other participants, or noise from outside the room).

Keeping on Task: Conducting a virtual meeting rather than meeting in person established a formal environment, meaning that participants were less inclined to initiate small talk and a high level of focus was given to discussion.

Small-Group Discussions: At various points of the meeting, we left the main meeting space and separated into small groups, enabling more focussed discussion.

Screen Barrier: There were some strong characters in the group, yet carrying out the meeting in a virtual environment gave me the confidence to voice my opinions. Perhaps in person, I wouldn’t have been so outspoken?

Voting: Surveys were used as a tool to help vote outcomes as critical or to eliminate them, following on from group discussions.

The voting procedure was anonymous which was particularly beneficial to participants who may have been uncomfortable sharing opinions in the small group discussions or joining a debate; everybody’s opinions could be shared and collected without judgement or justification.

Accessibility: Conducting the meeting online, enabled a degree of accessibility. There were no costs or complications of participants travelling to a venue, and people were able to join the meeting from the UK, Europe and the US which brought a lot of value to the discussions.

Shared Screen: Throughout the meeting, the management team shared visual data with the participants as effective prompts for discussions.

Shown below is an example of a screen used in group discussions—The facilitators moved the outcomes to different areas of the grid when the group decided whether they were critical. (Note: this is not a representation of the final result.)

Challenges

Technical Issues: As is common with holding meetings in an online environment, there were some technical interferences such as echoes and issues with the internet cutting off.

Mental Effort: Although I found it beneficial to see the face of each speaker, I realised that without access to the rest of their body language, I was intently trying to maintain eye-contact in an attempt to gauge connotations in speech—I found this mentally tiring.

Screen Barrier: Meeting in an online environment removes some of the human interaction that may naturally occur when people are physically sharing a space—an organised online meeting isn’t conducive to small talk. Perhaps participants could have made more meaningful connections had they met in person?

What Was Achieved in the Meeting?

By the end of the meeting, we had agreed on an achievable COS. Outcomes that were popular, but which didn’t receive sufficient votes to be classified as ‘critical’, will be suggested to researchers as additional aspects to study.

Note: When the research paper with the outcomes of the consensus meeting is published, the COS and publication will be shared in a future blog post.

Immediate Plans

There will be a follow-up workshop, to ensure that the definitions accurately capture the meanings of the outcomes in the COS, according to both healthcare users and professionals.

Future Plans

Once the definitions have been approved at the workshop, the literature will then be reviewed to identify what tests are currently available to measure the domains in the COS.

In the event of there being no tests that adequately capture the aspects of the relevant outcome domains, clinical researchers will be asked to concentrate on developing new tests for this purpose.

A final note…

I really enjoyed having the opportunity to connect with other people with SSD and professionals with a keen interest in the development of SSD interventions. Bringing together people from a variety of specialisms encouraged an active and productive discussion, and the experience was educational for all.

It was an honour to represent the healthcare user and to be involved in the making of important decisions that will shape the future of SSD research.