I recently had the privilege of attending a workshop hosted by the Victorian Renal Health Clinical Network at the state Department of Health, and to contribute to the future State-wide Clinical Pathway for Victorians with Chronic Kidney Disease and End Stage Renal Disease. A bit of a mouthful, but it was a collection of 60 people from all areas of renal services, including head nephrologists from the major state hospitals, private nephrologists, private dialysis service providers, renal nurse practitioners, key clinicians including nurses and allied health, peak bodies and ‘consumers’ like me, looking at our “could be/should be” future.
The aim of the workshop was to imagine a new care pathway covering all aspects of kidney disease, from the initial discovery of a problem, through all the various aspects of the kidney failure journey: pre-diagnosis, diagnosis, preventative action (eg diet), treatment (such as dialysis and transplantation), choosing to end treatment, palliative care, death and bereavement: the whole enchilada.
Clinical pathways are highly detailed flowcharts used to manage the quality of care by standardising all aspects, steps and even outcomes in the care processes. This new renal disease pathway will set out newly optimal practices for all kidney patients. It will follow a predictable clinical course, with minor variations, in which the different tasks done by the professionals involved in the patient care are defined, optimized and sequenced through the kidney failure lifecycle (if you can call it that).
The workshop was divided between six working groups covering the four major topics of the pathway:
- Chronic Kidney Failure (the start of the cycle)
- Supportive (including palliative) care.
I was part of a Dialysis Working Group, and here are some of our highlights (I couldn’t take note fast enough to get the lot!).
Questions asked included:
What does a good dialysis service look like?
Our answers included that it should:
- Be Geographically accessible
- Provide quality, evidence-based care
- Offer flexibility for various patient needs (eg flexible hours for those still working)
- Be measured on patient-oriented Key Performance Indicators (such as high patient satisfaction scores, ongoing good quality of life, low infection rates)
- Have a high level of staff retention and satisfaction.
Other elements that contribute to patient satisfaction are the sharing of care initiatives and information between dialysis providers and a strong sense of community with each unit. It became clear that a great way to promote community is to have a facility for sharing patient stories (maybe in the unit newsletter?).
How to best provide information and education?
Our answers included:
On an individual basis, timed for when the information is important to them. For example, when a specific problem occurs (eg being itchy, or constantly tired) and the patient is most receptive to information that will help solve the problem.
Education should be available at call, typically in small chunks, ideally in a multimedia format, say on an App.
Peer support. Another form of education delivery could be provided by peers, which has the credibility of personal experience that other patients can relate to. It’s also cheap and readily available. Some private units are already using experienced patients as mentors for new ones to great effect.
One overlooked facility with great potential is the “phone a friend” facility provided by Kidney Health Australia. More details on their website.
Providing Patient-Centred Care?
Answers put forward included:
Some (blue sky) discussions about changing the care model so that consultations with specialists (eg nephrologist, cardiac, endocrinology, vascular) would be more effective if they took place over a single or a small number of sequential sessions. This already happens in some outpatient clinics (not for dialysis patients), followed by a joint debrief between all the medicos involved. So it’s not quite blue sky thinking, especially when combined with the TeleHealth initiative suggested below.)
Other interesting suggestions included:
- Using TeleHealth systems to bring various services to the patient
- Having consultations while having dialysis (though I think that should be limited to the first hour, based on how non-sparky I am after that)
- Using the Australian Government’s E-Health Record for at least recording medications and pathology results
- Using regular web/App-based surveys to all stakeholders, to identify gaps in care clinical problems, education needs, etc.
From the dialysis perspective, establish protocols (and technology as appropriate) to actively manage appointment times: provide realistic appointments at least a few days before each dialysis session and early warning of unavoidable changes (some units do this well already)
Several allied health participants suggested that it would be useful for patients to have ongoing cognitive assessments, eg for home dialysis patients; to be sure they are coping performing what are quite complex tasks. (This is probably a good idea, but not for me! I’m not keen to see that particular trend line.)
Technology, sustainability and Innovation?
Ideas suggested include:
- Opening a proportion of each unit’s dialysis sessions to the Internet so that patients can arrange swaps via App: say for special occasions (like the Melbourne Cup), different cities, etc.
- Establish an App-based holiday booking service or a timeshare-like arrangement for patients looking to holiday in remote locations (eg the DATA holiday units or the Big Red Kidney Bus)
- Establish a renal data sharing system for use between units
- Include a Health Informatics Working Group in designing this pathway
- Set up a generic system for patients to request prescriptions, referrals, etc (there’s already at least one App for that, which I use: MedAdvisor)
- Establish a TeleHealth service (including Medicare item numbers) for Renal Psychologists, dieticians, social workers, etc.
- Introduce defined renal career pathways, including renal university courses to ensure the existing renal professionals will be supported and replaced over coming years.
Mark Twain once said, It is difficult to make predictions, especially about the future. It was difficult and exhausting, but a great day. Everyone, from the most sceptical grey-hair to the bright-eyed newbie was energised and enthusiastic. Thinking outside the square really generated some genuinely innovative ideas for the future. Many people went away determined to implement some ideas immediately at their local level.
I’m looking forward to the next big steps: the workshop report, the final report and recommendations, then, TA DA: the rubber hitting the road – the a new Pathway for BigD-ers not just in Victoria, or Australia, but for all points north.
With luck, we can check out the new pathway on this blog in the near future, while we book our holiday dialysis chair on the Gold Coast using our smart phone.