Accessible communications in health - Prof Katie Ellis (part 1)

Speaker 1 00:07 (THEME)

It's up to you and me to shine a guiding light and lead the way United by our cause we have power to pursue what we believe We'll achieve the realisation of our dreams...

Speaker 2 00:30

Hello, welcome to this week's episode of New Horizons. I'm Vaughan Bennison. Thanks once again for joining us. This week, the main portion of our program will be devoted to the first part of a presentation given to the round table on information access for people with a print disability by Katie Ellis. Katie is with Curtin University. Just ahead of that though, a couple of announcements for you and you're likely to find these in this week's member update but for those of you who don't get the member update, just letting you know.

Firstly, an email I received from Stefan Sluki. You might recall that Stefan is with the Queensland branch of Blind Citizens Australia. His email reads, the email list administrator of the Queensland branch of BCA is stepping down at the end of 2024 due to responsibilities outside of BCA. The branch committee is looking for someone to fill the role. Preferably someone familiar with the workings of the groups.io platform, but certainly someone who will assume management of a group of email lists, the traffic on which is quite light and produce a short quarterly audio news file. Our current administrator, Michael Hart, is willing to show any interested person the workings of what's required. He has set things up, but it now needs someone to care take the lists. Anyone interested, please contact me on Queensland, all spelled out, queensland@bca.org.au ... That's Queensland at BCA dot org dot AU. 

Secondly, we're looking to establish a New Horizons team. I've been doing New Horizons now for almost nine years. It'll be nine years in October, and it's time for some new voices and some new talent and maybe a little bit of a change in direction of the program. That's something that will be discussed later on. But if you're interested in becoming a part of the New Horizons team, and that could be as a presenter, an interviewer, a content editor, or as a producer, as in someone to line up interviews and find stories that are of interest to our listeners, get in touch, new.horizons@bca.org.au ... new dot horizons at BCA dot org dot AU. We're looking for a variety of people. So if you have an interest in that area and some skill, then do get in touch. 

The expressions of interest will be vetted. So let us have your EOI by the end of August. Let us know what sort of experience you've had in the area. You don't have to have had any experience, but ideally we're looking for somebody who doesn't need too much training, although training will be available. Remember that this is all voluntary. So it requires voluntary time to provide the training and all of that sort of thing. So, you know, please be understanding that, you know, you do need to have some skills in the area in which you're interested in working.

Now to our main feature for this week. Here's Sonali Marathay, the chair of the Round Table on Information Access for People with a Print Disability.

Speaker 3 03:34

Katie Ellis is a professor in Internet Studies and the Director of Centre for Culture and Technology at Curtin University. Her research is located at the intersection of media access and representation and engages with government, industry and community to ensure actual benefits for real people with disability. She has authored or edited 18 books and numerous articles on the topic of disability and the media, including most recently the monograph, disability and digital television cultures.

Speaker 4 04:13

I'm here today, I'm gonna be talking about, talk to you about a project I completed last year with Sydney University and the Centre for Inclusive Design for the Department of Health and Age Care on the way they communicate with people with disabilities. And during this project, we did focus on the pandemic because, you know, why not? It was really trendy at the time. So I'm just to think a little bit now about COVID. COVID, so COVID was a watershed moment in terms of coming up with new ways of communicating. And we all needed different forms of communication during COVID and I have a meme here that I really love. And it says, everyone, how do we survive without being able to go outside and me with a chronic illness?

Let me show you how it's done. So during COVID, we had to redesign the world so that we could still participate in the workforce and community life without actually leaving our houses. And the way we did that was through accessible digital communication. Accessible communication benefits the whole population and not just people with disabilities. So what then happened during COVID-19? So the health of people with disabilities worsened. Telehealth consultations became something that we started doing, something people with disabilities have been asking for for a long time prior. 

Discriminatory health systems and communication practices impacted people with disabilities in three ways. First, people with disabilities were at greater risk of contracting COVID. Secondly, people with disabilities experienced a more severe version of the disease or death. And the third impact was new or worsening health conditions were experienced within the disability community. And we thought that some lessons learned during COVID-19 could better inform the health system and prepare us for future emergencies or just future illnesses that might happen.

So in the project, we were looking at how digital health systems could be redesigned with health quality in mind to avoid deepening health inequalities for people with disabilities and everyone else. So disability and health, we're getting into the literature review findings now. So 2 .8 million Australians with one of eight major chronic illness also have a disability. So people with disability experience multiple chronic conditions and disability.
Health is a significant concern for people with disabilities. However, people with disabilities cannot be taken as one big group. People have different experiences, different conditions and different things they need to focus on.

Women with disabilities are around seven times likely as women without disability to assess their health as fair or poor. Adults with severe or profound disability were almost 12 times as likely as adults without disability to experience a very high level of psychological distress. And I think that is something that most people could relate to during the panic was that it wasn't just the physical situation we were dealing with and the threat of COVID. There was a whole other layer of anxiety that we were experiencing on top of this. So for people with disabilities, 65 or younger living in the community in outer regional and remote areas were less likely to see a GP, medical specialist or dentist than those living in major cities, but were more likely to go to hospital emergency.

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So to conduct this literature review, I assembled an interdisciplinary research team of researchers from the humanities, researchers from health and researchers from library and information studies to do a comprehensive literature review. We focused on academic literature and grey literature focusing on the way people with disabilities and access the web and social media, what kind of health information they were seeking and what were the best practices in understanding and addressing the requirements of this group, people with disabilities. We focused on inclusive and universal design and we looked at emerging and future technology. So we did look a bit at AI, we did look at gaming. But spoiler, what we found was we need to get the basics first before we start going into areas like using gaming as a forum for health information.

So in total, we looked at 176 academic studies and 88 grey literature items. The scope of our research was international. We looked broadly. We did try to have a detailed focus on Australia. So our key findings were, firstly, during COVID, there was an innovation in digital communication. The COVID-19 pandemic was a time of significant digital innovation. But what we found was during that time, a lot of this innovation was not evaluated. It was rolled out, but at the time, it was emergency situation. So people weren't necessarily looking at this, whether or not this innovation was actually working or if people liked it. 

So the second key finding was that co-design is so important. Any form of communication with any group, and particularly with people with disabilities, needs to be co-designed with that community. And this is because trust is a significant factor in determining whether or not people with disabilities will actually pay attention to the communication messages and we know during a pandemic, trust is so important in the whole community. You won't act in the way that you need. You are being told you need to act unless you trust that that message is correct and useful. 

And finally, communication preferences. People with disabilities communicate in different ways and one size does not fit all. So for disability, generally, people reported a lack in trust in government communication. They reported that there was a lack of alternative formats and lack of targeted campaigns for people with disabilities, lack of digital communication and generally a discriminatory health system. For people with autism, the studies we found focused on trust and the discriminatory health system. Again, deaf people reported barriers in terms of trust in government, lack of alternative formats and targeted campaigns and discriminatory health system.

Ageing population also show up there around trust in government and digital communications. People with neurological conditions reported there was a lack of targeted campaign and also a discriminatory health system when they did present in the health system. For the blind community, we did not find studies where they reported a lack of trust in government communication, but we did find a lack of alternative format, lack of targeted campaign and lack of digital comms again and discriminatory health system.
And then we go on with multiple sclerosis, chronic illness and youth with intellectual disability also reporting similar barriers. Within the health system. So to get into some of our recommendations, people want personalised health information.

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And we saw this year, we know that it took five weeks for the government to roll out a health communication strategy for people with disabilities. And in that time, what happened was influencers with disability started using social media to make sure that specific disability communities actually had access to the health communication in the absence of an official communication.

So why is this important? It's important because individually tailored information is more likely to meet those personalised health needs of people with different disabilities. And then while there was some delay in coming, in creating a health communication strategy for people with disabilities, ultimately we found that communication and information for people with disabilities did become a priority in the wake of the COVID-19 pandemic. And this is important because poor communication practices are a key feature of discriminatory health systems. And the literature identifies several different types of communication strategies that benefit people with different disabilities.

I'm gonna talk about in a minute that I think benefit everyone in a situation like a pandemic.

Speaker 2 13:58

And we'll conclude that presentation next week. If you'd like to get in touch with Blind Citizens Australia, the phone number is 1-800-033-660 ...1800-033-660. Or you can email, bca@bca.org.au ... BCA at BCA dot org dot AU. Don't forget, if you're interested in helping out the Queensland branch with the administration of the email list, queensland@bca.org.au is the address. And if you're interested in becoming a part of this trial New Horizons team, and if you're interested in becoming a part of this New Horizons team, get in touch, new.horizons at @bca.org.au ... In the meantime, I'll talk to you again next week.

Speaker 1 14:45 (THEME)

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