Redesigning healthcare systems to be more accessible.
The Covid restrictions saw an increase in Telehealth services and a flow-on effect was that it provided a safe space for people with accessibility differences.
To sustain this, planning must go into adapting existing clinical practices.
We need triage tools to identify which consultations are suitable to provide virtual care before we can engage with patients and provide them with a choice.
We need to better understand the problem before we can determine what service changes might appeal to people with accessibility differences.
People with lived experience need to be involved right from the start in the planning process.
Healthcare must be open to the knowledge of what it is actually like to live with a disability.
Then we can design new systems that narrow the gap and make the process of getting a diagnosis and seeing a clinician faster.
As healthcare professionals, we are all incredibly busy, but taking the time to listen is when patient-centred care shines.
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– (Gillian) Do you have questions Roger? Fire the questions at us? We’ve got a bit of time left to talk.
– (Roger) Yeah, we’ve been going nuts here. Really simple one but caused a bit of fury is that people, Jonathan, want to know what happened with the scrubbing in, did you get to scrub in?
– (Jonathan) So I think basically it’s a lot of massaging at the moment with different people. I think we’re working on it. My surg term is number five. So we’ve got a bit of time. I think in the end it’s really about people knowing who you are.
For example, when I was at North Shore, all of the theatre people ended up knowing me. I remember one of the first times I walked in to the theatre. I buzzed and I went in. The theatre manager, she’s like, are you a patient?
I was like, oh no, I showed her my badge. It’s just stuff like that. I think once people know you then they understand what you can do. You’re not just a foreign person.
People at RPA are actually quite lovely. The culture there is quite supportive. I think once people start knowing you then they’re really happy to help.
– (Roger) Okay, thank you. This is a question that goes out to the entire panel, but maybe to Jean-Frederic somewhat. What are the barriers to physician uptake of Telehealth? I know when I was listening to you guys talking the other night I was surprised at how keen you were on Telehealth because we all hate zoom. Yet you’ve given us a compelling reason for why it’s really useful. I wonder what you think the physician uptake barriers are?
– (Gillian) Now don’t get me wrong, we love shaking the hands of our health professionals. It’s weighing that up between: it would be nice to see you face to face but actually I can’t waste three hours of my day doing the trip if actually all you’re going to do is look at my blood work today. I could see you in person next time when you have to touch me.
– (Jean- Frederic) Yeah, I mean the experience of Covid has been so disruptive. The reality is that everybody had to default to a replacement solution. Let’s all go on the telephone or let’s use Zoom to see patients, etc.
The groundwork to make this work for clinicians and embedded in clinical practice needs to be done. We need triage tools to identify which consultations will work for virtual care and what types of consultations wouldn’t.
Then we can engage with patients and give them a choice but also provide the right documentation about why a face-to-face consultation is really relevant now. The evidence in the literature is clear. There are a lot of benefits to virtual care not just in terms of the patient experience but also in terms of clinical quality of care. There are things that work really, really well in virtual situations.
For some subgroups that have tended to be stigmatised and for whom access to healthcare may be a challenge, virtual care was providing a safe space. So we need to learn and work with clinicians.
We’ve had many clinicians come back to us to say, “this is not working” because patients forget their appointments. “I go on Zoom and I wait forever.” “I thought my next patient was face-to-face” it’s clunky at the moment.
So we really need to work to redesign the outpatient clinic. So that we can really harness those technologies in a way that will fit
into clinical practice. Let’s be honest, every clinical encounter is a partnership between a patient and a clinician.
The patient needs to be driving the way we design healthcare but without ignoring how it will fit with providing good, safe clinical care. We’ve got a lot of work to do. That’s why we’re investing in a virtual care accelerator with e-health in New South Wales. Really working on all
of the different aspects of delivering health care and trying to revise the way we work. Engaging patients in local areas to build pilots and new ways to work.
– (Gillian) How are consumers involved in that process?
– (Jean- Frederic) Well, there are methods for that. I’m a science person, that’s why I said ‘nerdy’ in my introduction.
– [Gillian] We are all scientists in medicine and healthcare.
– (Jean- Frederic) So there is a lot of science around it and there’s also a lot of learning about how to use those tools. Co-design is a method
that we can really use in many different areas.
We can also make sure that we go to a broad range of people and really try to understand what the most common problems are etc.
Then, create a space where clinicians and patients can work together at designing a solution. Our role at an agency like ACI is to really be the facilitator of that process so that when physicians and patients agree, we move on. When they disagree, we try to find out why and then build something that will create a jointly owned solution. It’s a lot of work, it’s a lot of time and it’s a lot of effort.
We need to do it in a rigorous way and in a way that is also respectful of everybody’s expectations. So we’re learning to increasingly use these co-design approaches in healthcare system redesign.
– (Gillian) Yeah and I think we can’t forget that all of this rapid Telehealth implementation happened in the middle of a global pandemic. Like I’ve been providing Telehealth appointments and receiving them and it’s been the most stressful time that most of us have ever experienced. It feels almost like you we hate Zoom because we want the pandemic to be over. I think there’s an element of that.
People haven’t had the brain space to learn and the cognitive capacity to learn all of these new ways of doing things whilst there is such a high level of stress and uncertainty and everything going on for patients and clinicians.
I’m going to stop there because I’ve got a lot to say about that but I’m not going to. Do you have another question?
– (Roger) Yeah, I’ve got stacks of questions. Perhaps another simple one to the group is in terms of research design, how do researchers access the consumers? I guess that there’s a bit of uncertainty around how do you go about getting people voices?
– Yeah, so I’ll answer that one because I’m actively involved in research and that’s a great question too, whoever put that in. Research or co-design, has to start from the top. So you have to involve people with lived experience right from your protocol. When you’re submitting ethics you have to have each consumer involved. If you don’t have that involvement at the start then the whole design process is about what the clinician wants, not really what the consumer wants.
– And not just once, right? It’s like, how is this solution going to work to deliver better health outcomes? If I don’t define what the outcome is supposed to be in consultation with the consumer, or the patient, or the person, then you’re really just going to them to get a check, do
you think this problem that we’ve solved is going to be good?
– Yeah, exactly and so to actually to answer the question on how to involve consumers, there are actually lots of consumer groups out there. Whether it’s autism, whether it’s multiple sclerosis, whether it’s spinal cord injury. If you involve those agencies at the start, they can direct you on how to best involve people with lived experiences in your research.
– (Gillian) Or employ them. Part of my job is I work in recruitment. So I involve patients in stroke research. I look for participants
and I help trialists design their recruitment strategy. In doing that, when we started this project and I was tasked it, the job description
was find the participants for the trials and go spend more time in hospitals to find them. Very quickly, it was clear that that wasn’t going to work.
Where it did work, was where I had existing relationships with people who live with stroke. We need to accept the skills and lived experience
of people as expertise that’s needed in a team. So if you’re organising a project, you need to make sure that you involve people with the relevant expertise and that includes lived experience. It includes clinical experience. It includes health manager experience, depending on what the project is.
So I think you also just need to know people and have relationships with people. If you work with people with lived experience, that’s relevant, that’s way easier because at least you’ve got a starting point. You get to know more about the culture around disability. Disability culture is something that I didn’t even really know existed.
I think employ us and then seek out members of research teams that are going to have the expertise that you need. Were you going to add something?
– I just agree with you. I think that there’s so much knowledge that we can learn from patient experience, clinicians knowledge and the new technologies of virtual care but also telecommunication, etc. are really helping many research projects have that added component to it.
There’s lots of virtual care trials going on at the moment. It’s a world of possibility.
– We probably could run a workshop on consumer involvement in medical research. The most important things are breaking down the power structures when you’re working within a research team. Most of us are used to having a patient- doctor or a patient- clinician relationship with consumers.
That doesn’t work if you’re working together as part of a project team. So your approach to working with people needs to be different there.
– Don’t be afraid to engage, just because someone has lived experience doesn’t mean they don’t have other experiences too. They may be a researcher, or they may work in other fields. The importance of involving lived experience is that you can design a trial that will actually fit with the lives of the people you’re trying to investigate.
So, a great example here is in spinal cord injury. If you’re going to make appointments for whatever reason, don’t schedule it in the morning when they’re doing their morning routine because it takes a while for them to get up. So, just simple things like that, if you have consumer input it makes it so much easier for you to design a successful trial and have the patient numbers for them to be significant.
– If I can share an example, I recently did a story about how people with disability are really dominating the tech space at the moment. There are so many startups and accelerator programmes where people with disability are at the forefront of creating assistive technology.
Traditionally that assistive technology has been designed, manufactured by non-disabled people for many, many years. It now is this really
big, exciting thing that people with disability are designing our own technology but you sort of stop and wonder why wasn’t that happening the whole time?
If you’re non-disabled and you’re designing technology that you don’t even necessarily need to use, how do you know what we need? That’s the best way to sort of look at it, I think.
– (Roger) There are a couple of other questions that have identified the gap or accessibility to diagnosis, particularly for chronic
health conditions. What can we do to address that accessibility, where you often have to wait months for chronic health care appointments? How do we narrow the gap and make the sort of diagnosis and seeing clinical help faster? Because it sounds like there’s a lag often in establishing diagnoses and things because people have to wait months for appointments.
– (Jean- Frederic) Well, I can just re-emphasise the two areas of work that I talked about today. If we have a more routine assessment of people’s quality of life as part of clinical consultation we will unearth problems earlier for patients and that will support early diagnosis.
Virtual care is not just for clinician- patient interaction. There’s a lot of clinician to clinician interactions that can be harnessed through virtual consultation and in-reach programme so that we support primary care.
We support generalists working in rural areas and increased capacity to address some of those problems despite the location and
physical distance problems that we’re facing. Another thing I would like to emphasise is that those technologies help patients to connect together.
To a great extent, that’s an area that’s really evolving and developing and we need to harness that as well. There’s a lot that can be
done through peer support, not for everything, but certainly for many healthcare conditions, we need to make sure that that virtual
technology is available for groups of patients that want to create that connection and that peer support.
– (Gillian) I was reflecting on that as well. I mean, I’ve got a genetic connective tissue disorder, Ehlers-Danlos, and it’s the wait for a diagnosis. The wait to see a geneticist in the first place is extraordinarily long. I got my diagnosis when I was 20, I think and I’d had lots of problems beforehand. Many people aren’t being diagnosed until they’re adults. Being told that these things are normal growing pains.
What you made me reflect on was the interesting environment that it is being in an online patient support group. Some of the stigma that comes around when you might bring new information to a health appointment to say, “actually other people who are in this support group have said this about a treatment.”
Especially when someone comes to you talking about a treatment that really isn’t based in any science, the way that you react to that as a clinician can actually cause some access barriers for people. If you react and think, “oh, what are those unskilled people been telling you in your group?” That’s not going to work and you’re not open to understanding all of the knowledge that patients have together about what it actually is like to live with the condition. Like that’s a big problem.
Perhaps people b4cause they are waiting so long to receive medical care and a diagnosis, they’re turning online, of course we are.
– (Nas) I think another thing that I would point out is the importance of early intervention as well. I have a secondary condition. We don’t rank these things but apart from my vision impairment, I also have a neurological condition which affects my ability to read braille. I have a lack of sensitivity in my fingertips.
Now I struggled to read braille for basically my entire primary school education. I was falling behind incredibly quickly. I had this support
teacher who kept saying to my parents, no, she’s just really lazy. She just needs to keep practising. Don’t make excuses for her. She needs to just go home every night and she just needs to read and read and read.
It wasn’t until I was about nine or 10 years of age where I was actually taken to a neurologist and diagnosed with the condition. I was actually really exciting because I finally had this reason for why something wasn’t working the way everyone perceived it should.
It also meant that we could come up with new strategies. That could have happened so much quicker. I think if I was listened to and if there was more monitoring and evaluation. There’s a lot of research around this particular condition that I have now. But at the time there really
wasn’t, it was quite new. There wasn’t a lot known about it.
I think listening to patients is obviously one. This is all of the understanding that you guys are incredibly busy. You’re trying to see huge
numbers of people each day. We get all of that, but I think for me it was this particular teacher who didn’t listen but I think just taking that into account is really important.
– Absolutely, yeah and actually I have a smaller subgroup of my online support group which is three women who I had immunoglobulin infusions with and sat in the same room as every three weeks for 10 years. So we know each other really well. We do like a little three-way huddle before any of us has a medical appointment just to crosscheck “is this a symptom or is this something I should talk to the doctor about? Or can we sort this one out on our own.” There’s huge value in connecting with people and that lived experience knowledge.
So whatever also makes it easier for us to come to a medical appointment really prepared so that we can efficiently get to the main problem.
We’re going to need to just very quickly sum up. If you’ve put more questions on Twitter, I’m going to have a great time on the train on the way home looking through them and trying to answer them. Please get in touch through socials with us because we’d love to continue this conversation.
My closing word is please think of healthcare convenience as an access issue. Think about “how do I logistically make this easier for everyone?”
What’s your take home message Jono?
– (Jono) As I said before, normalising disability is something which I think we should aim to do. Whether it’s normalising with your patient or normalising in the workforce. Basically as we said, 20% of Australians have some sort of disability.
So if we’re excluding one fifth of our workforce then that’s a whole lot of people that brings in a lot of skill that could otherwise give us a better healthcare outcomes. So challenge yourself. If there are some people with disability, go and have a chat to them, have a talk to them. We’re not afraid. We don’t get upset if you ask us about disability.
– (Gillian) Unless it’s awful personal questions.
– (Jono) Yeah, do it in an appropriate situation obviously. But rather than assume, I think having that conversation is my take home message.
– (Jean- Frederic) I think we need to get out of our zone of comfort as clinicians and really embark on the redesign journey. We’ve just seen that we can do it in the last few months and now we can structure it so that it’s sustainable for the future. Both in terms of virtual care and patient reported measures so that we provide person centred care for people.
– (Nas) Listen, learn, consider new perspectives and know that you’re not always going to get it right but please wherever possible ask. Just be interested in knowing more about each individual patient.
– (Gillian) Thanks so much for having this discussion with us.
– (Roger) That was an amazing session to be a part of and thank you all so much. I think a confession to the panel is that as a conference
organiser for 30 odd years I’ve just never really thought about accessibility until these last few weeks. Particularly Gill, because of you and Jessica. It’s really going to change the way we look at how we do business and the questions we ask. Rather than waiting for people to tell us that they’ve got an accessibility issue we’ll be asking, “how can we help?” “How can we make ourselves more accessible?”
So on that note, thank you all amazing panel.
Nas Campanella is the ABC’s Disability Affairs Reporter. Nas is totally blind and lives with a neurological condition called Charcot-Marie-Tooth (CMT) which means she can’t read Braille. After completing a Communications degree at the University of Technology Sydney, majoring in journalism she started with the ABC as a cadet. Nas has worked as a regional reporter in south eastern New South Wales and then as a triple j newsreader for seven years. In taking on this role, Nas became the first blind newsreader in the world to read and operate the studio for herself live to air. In 2020 she was appointed to the senior national Disability Affairs role.
Jonathan Tang is an early career researcher and clinician with a passion in the field of spinal medicine. Recognised for the ability to contribute thought leadership to the translation of research into clinical practice and the development of patient centred care from the perspective of the person with lived experience. He is currently an Intern at Royal Prince Alfred Hospital. In 2012, Jonathan broke his neck at a trampoline accident resulting in an incomplete C5 tetraplegia. Ironically, he was working as a physiotherapist in rehab at the time.
Jean-Frédéric has a Medical Degree, a Masters in Community Health and a Doctorate in Public Health from the Université de Montréal, Canada. He is a Fellow of the Royal College of Physicians of Canada in Preventive Medicine and Public Health. He is a member of the Strategic Analytic Advisory Committee of the Canadian Institute of Health Information and a member of the HealthShare NSW Board.
Gillian Mason (she/her), has gained insight into and lost patience with inflexible healthcare systems, managing the demands of two complex chronic diseases and a 15-year career as a physiotherapist, rehabilitation researcher and science communicator. She was born with the genetic connective tissue disorder Ehler’s Danlos Syndrome and developed Chronic Inflammatory Demyelinating Polyneuropathy a decade ago. She is a consumer representative on the Australian Government’s Medical Services Advisory Committee and Health Technology Assessment Consumer Consultative Committee and a passionate advocate for access and inclusion in healthcare. For the University of Newcastle, at Hunter Medical Research Institute, she manages the Stroke Research Register and provides training and mentorship in the involvement of consumers and the community in research. As a clinical research assistant for the Centre for Rehab Innovations, her focus is on developing solutions for delivering individualised, accessible rehabilitation, supported by telehealth and digital health applications.