By Gillian Mason, 18 August 2020
(scroll down if you’d just like to read about the August 2019 Forum)
It’s taken me a while – a year! – to get around to blogging about the 2019 CRE Stroke Telerehab Research forum and hasn’t there been a lot change since then?! Last August, we brought together researchers, clinicians, health managers and stroke survivors in person in Newcastle, as well as online nationally and internationally. We discussed telehealth as a strategy for improving access to effective and timely stroke rehabilitation.
A year on, with the impact of the COVID-19 pandemic, we’ve seen some parts of the healthcare system embrace and rapidly scale-up telehealth usage. I learned recently that Australian telehealth platform provider Coviu had clinicians using the platform for 400 video consults per day in February, which surged to 25,000+ per day in April 2020!
We’re never going back to healthcare business as usual. This is also a stress test for us. We have a unique opportunity, and a responsibility, to make sure that we’re inclusive about who our future health systems benefit. Patient experts, especially people with disabilities, chronic health conditions and people for whom healthcare was difficult to access pre-COVID must be consulted in the evolution of rehabilitation services. We have clinicians in our Centre for Rehab Excellence with decades of experience in delivering rehab using tele- and digital-health modes, shifting some aspects of rehabilitation from hospital, into the home and community. Harnessing the combined expertise of patient and research/clinician groups is essential as we move through this crisis to develop the accessible, high-quality rehabilitation services that all Australians deserve.
Six months into the pandemic, we’ve established the Australian Telerehab Community of Practice. Led by Professors Dominique Cadilhac and Coralie English there are now 330 members, mostly clinicians working in rehabilitation, sharing skills, experience and knowledge of best practice in telerehabilitation. You can join us, here.
There is also an expanding list of stroke-specific telehealth resources available on the Stroke Foundation website.
Opinion: we’re doing well, but we have to make sure we evaluate, and re-evaluate what’s important
It’s been exciting to see some genuine co-design of telerehab approaches and services with consumers and clinicians over the past few months. Clinicians have been upskilling in delivering therapy over video, becoming familiar with the research evidence and putting new skills into practice. Patient users have been sharing their experiences and working with clinicians to trouble-shoot around stumbling-blocks to make things easier for the next person. It’s exciting.
At the same time, though, there’s been a lot of rapid-response upscaling of the telehealth services and their admin processes that existed before COVID. I’ve been on both sides of the tele-bedside during this pandemic. I’ve been running a research telehealth clinic, and also, for various reasons, I’ve needed a telehealth appointment for myself almost every week since March. I’ve seen various clinicians via tele for various reasons, including rehabilitation. Booking systems, the processes for getting information about appointments to patients and appointment reminder systems weren’t ready for service at this scale. There has been a lot of confusion for patients – in my personal experience and corroborated by other patients in my social media messages – around what to expect. Will I receive a videocall today or a telephone call? Do I have a choice? Will I be sent a link by email or text, and when? What technology do I need to have ready and tested? How long will I wait and how will I know when I’m officially in a waiting room? How can I check in with reception, and do I need to?
The logistics around and the experience of the Personal Medical Admin really matters. If you’re stressed and exhausted by the time you get to see the clinician on-screen, especially if the clinician is also frustrated and uneasy, you lose a lot in terms of your ability to engage in quality clinical care. You lose infinite amounts of time. Energy. Enthusiasm. Let’s not pretend that these waiting and uncertainty issues aren’t also problems in traditional face-to-face clinic settings, because the process of securing an appointment, driving-to, parking-at and waiting-in a hospital clinic isn’t free of stress and annoyance, but at least that feels familiar.
Patients haven’t been armed with information (certainly not accessible information) about what “good care” looks like when delivered online so they can navigate care modalities and develop realistic expectations. Clinical telehealth teams and help-desks (for clinicians and patients) in public health services haven’t necessarily been upscaled to manage the surge in usage. I’m terrified, frankly, that negative clinician and patient experiences with The Admin and logistics will drive a rapid scaling-back of telehealth options, as soon as it can be justified from a COVID-risk perspective. Will we have asked users the right questions when we’re evaluating? Will we cancel tele-options because people said the experience was difficult to navigate, but forget to weed out the admin processes from the clinical care? Will we forget to check in regarding how stressful accessing ongoing face-to-face services are during COVID also?
Including the expertise of our implementation scientists and patient collaborators in process evaluation has never been so important.
Let’s return to a run-down of the forum in August 2019 – in the time pre-COVID
Prof Stephen Faux told us that the earliest documented case of a telehealth consultation (via The Lancet) was in 1897 when croupe was diagnosed over the telephone. I first learned that Hunter New England Health had all the infrastructure and support needed for me to start using videocalls to see my Hunter New England Local Health District rural and regionally-living rehabilitation patients 6 years ago. The Centre for Research in Telerehabilitation has been demonstrating the efficacy of using telerehabilitation for communication and swallowing disorders for 17 years. South Australia has been steadily developing a state-wide telerehab service with excellent patient satisfaction (see what telerehab patient Dennis had to say). Yet, pre-pandemic (and spoiler alert – still now in August 2020!) stroke rehab brought by telehealth to your home is not yet accessible everywhere in Australia.
Research Workshop – a call to action & sharing of expertise
Researchers, clinicians, telehealth managers workshopped the nitty-gritty of research design, data analysis & technology issues. Aspects of planning, designing, running and evaluating effective telehealth research and implementing it into practice were discussed. Kenny Lawson from HMRI outlined how to plan a health economics evaluation and Ashley Young talked through his 7-years of change management experience managing Hunter New England Health‘s clinical telehealth implementation and with Jenny Rutherford who’s taken over the post from Ashley, discussed how to choose a fit for purpose platform. Annie Hill and Trevor Russell prompted us to think about moving away from trials that simply seek to show that telehealth interventions are not worse than face-to-face rehabilitation sessions – and rather also look for the opportunities to see what telehealth can do better. Rene Stolwyk walked us through how he got his business case for a tele-neuro-psychology service funded and established a sustainable service. Dr Zoe Adey Wakeling (Adelaide) & Dr Ingrid Rosbergen (Sunshine Coast) shared their experiences with designing and implementing sustainable telerehab solutions into clinical practice.
Dr Liz Lynch and Dominique Cadilhac explained how and why a proper process evaluation is essential in understanding how and why interventions and their implementation do and don’t work in the real world.
Click here for some snapshots of slides and key highlights
Public Forum – Science-based rehab reaching more people with videocalls
The afternoon’s public forum was livestreamed – on a shoestring – and with just enough bandwidth!
Michael Nilsson introduced the day and Rachael Peak invited stroke survivors to join the Stroke Research Register (Hunter) to be linked in with rehabilitation research.
Annie Hill stepped us through some of the almost 2 decades of work the Centre for Research in Telerehabilitation (Uni of Queensland) has been doing to establish a strong evidence-base for telehealth as an effective modality for communication and swallowing therapy. Exercise Physiologist Margy Galloway and stroke survivor and research participant Ray Gray presented on the efficacy of and the patient and therapist experience of a telehealth for fitness training trial. In the ExDose program, participants got fitter, attended 94% of sessions and no one withdrew from the trial because they got tired of ‘the telehealth’.
Stroke survivor research partner Meredith Burke introduced the ENAbLE pilot (CI Coralie English, trial managed by Margy Galloway) which will test the feasibility of a co-designed diet and exercise intervention delivered entirely online (PhD students Emily Ramage and Karly Zacharia will develop the exercise and diet arms respectively, collaboratively with clinicians and consumers).
Stephen Faux and Chris Bladin zoomed in from Sydney and shared their experience in providing emergency stroke care and medical neurorehabilitation using tele, and setting up Australia’s first early assessment for rehab service, where a rehab specialist is able to link with patients at the bedside within 48h of their stroke.
Dr Dana Wong (also for collaborators David Lawson, Rene Stolwyk & Jennie Ponsford) described how she’s demonstrated that memory rehabilitation can be delivered effectively using telehealth methods and that these options improve access to rehab.
I had the privilege of finishing the day by hosting a panel conversation with stroke survivors Raymond Gray and Stephen Ward, Stephen’s wife Tracy Ward, Rehabilitation Specialist Dr Rohan Grimley, HNEHealth Telehealth Manager Jenny Rutherford and Research Lead for the Victorian Stroke Telemedicine service Dominique Cadilihac. Key themes were accessibility for people with communication impairments, people who live rurally, ensuring that home-based and longer-term perspectives are considered, and perspectives on what areas are urgent to target.
Watch the recorded public forum here, with the panel discussion starting at 1:40’.