I love treating lymphoedema and I've had the privilege of honing my craft at Royal Prince Alfred Hospital (RPA) for over 20 years. I took a turn 10 years in and added research to my skill set with a Master's and PhD at Sydney Uni. I've recently followed up with a post-grad Fellowship chaser. I'm now a clinician researcher and Lymbase commercialises the doctoral research.
While swelling is a normal response to injury when it becomes chronic it creates a cascade of local tissue changes and inflammation, with progressive size increases in the affected limb, high risk of local infection, skin changes and impaired healing. In the absence of a drug or surgical solution to lymphatic impairment manual decongestive treatments and medical compression wear is used to prevent progression. These are prescribed by lymphoedema therapists.
Lymbase, (lymphoedema database) stores, analyses and displays the assessment data routinely collected at every visit. It replaces the numerous inefficient paper-based systems currently used and engages patients in their self-management. Health contracts provide access to more than half a million compression garment options for patients with swollen limbs. These options are currently accessible via paper catalogues. Lymbase provides a digital search engine to replace this time-consuming paper search.
Frustration at the time wasting was my starting point. I was waiting for the world to provide a solution and it wasn't there. We use a lot of paper based processes that are inefficient and I expected that the introduction of the electronic medical record would be the answer. When it arrived and it didn't I realised I needed to try and solve this myself.
I didn't fully grasp the importance of change management. I was supported by a fantastic organisation - Sydney Health Partners with a Fellowship to free up clinical time to formally evaluate the implementation of Lymbase with patients and clinicians. The patient evaluation was overwhelmingly positive. but for clinicians there is work in change. It is not enough to make a small improvement. Your device or software needs to be so good that it can overcome habit and so in a lot of ways your biggest competitor is the status quo.
Health systems need to be more agile. The resistance to change comes back (rightly) to a low appetite for risk and an overstretched workforce. It is great, though, to see change on the horizon. As some of the fear falls away, we're seeing valuable investments in systems change, such as the move to a single digital health record. AUSCEP supports clinicians with a vision for how systems can improve for patients. The main tool in the arsenal is tapping into the resources willingly shared by their impressive mentoring group. In sharing the learnings from those who are walking or have walked the rocky path of innovation before ideas are developed and barriers are side-stepped. The barriers are significant but the inspiration, resources and mindset offered by AUSCEP enable good ideas to prosper.
Interoperability will enable the uptake of bespoke digital tools for different conditions freeing clinicians up to do the work of care. Prevention and supporting health will increasingly come into focus.
It is difficult to name a single moment because AUSCEP has helped me grow in ways I didn't expect. I was aware that I spread myself too thinly in trying to be a clinician, and a researcher, and a founder. One of the mentors I recently met with was able to help me realise that my 'busy work' was actually a willing distraction, diluting my focus on the real work of telling people about the amazing product we've created. I'm so proud that I have achieved my vision of making something that is no cost to the user so that finances need not be a barrier to use. The unique business model with funding derived from being a marketplace for compression wear is an enormous achievement that I am really proud of. It was fear of judgement or failure, or misplaced humility that was holding me back from telling potential users. As a clinician, selling is something I am incredibly uncomfortable with, but AUSCEP has taken me to this place where I can face my idling and fight against it.
We have such valuable insights about the experience of patients, health systems and, of course, our own roles. Not only are we in the best position to advise on where there are gaps, we also need to be involved in creating solutions, and evaluating/directing implementation. Find a community and get involved
My immediate focus is on user support and clinician uptake. I’ll be taking the opportunity to present my findings from the implementation evaluation at lymphoedema conferences internationally to facilitate international exposure. The US has just included medical compression wear under Medicaid so this is the first stop. I also have a lot of ideas for increasing the value of the platform particularly detection of lymphoedema for those at risk from cancer treatment. Finally, clinic-level data can be used to unpack what treatment/solutions are best. Building a learning health system is the ultimate goal for Lymbase.
