Dragon Claw fires up for self-management of RD
Version one of an interactive website called Dragon Claw that is aimed at providing information and support to people living with rheumatoid disease has gone live, with plans to add extra modules that can track the disease state and physical measurements as well as provide telehealth options in the future.
Developed by well-known telehealth expert Michael Gill, who has severe rheumatoid disease (RD), Dragon Claw promises to be a radical shift in the way chronic illness can be self-managed, bringing together people with RD and its sister conditions lupus and juvenile idiopathic arthritis, their carers and a range of medical and allied health clinicians.
The idea is to provide information and community support to people with RD, but importantly to also provide them with the ability to coordinate their own care.
Mr Gill said RD – more commonly but somewhat erroneously called rheumatoid arthritis as it affects far more than the joints – required a number of different health interventions over the course of the illness, including general and specialist medical care, exercise physiology, nutrition, pain support and what is often forgotten, mental health support.
“The current way that people with chronic disease are supported across the health system is based on the episodic model of acute care, so there are lots of holes and cracks,” Mr Gill said.
“People like me need a whole range of services over a long period of time but no one organises it really well. It cost me $20,000 to organise my own care that got me in the position that I am now functional. If I hadn't spent that money, I would still be only 25 or 30 per cent functional.”
Mr Gill said that while the MBS provides an item number for a GP to do team-based care planning, very few GPs actually take it up. “So the obvious answer is, 'OK, let us do it',” he said. “That is the genesis of Dragon Claw.”
Dragon Claw – which alludes to pain from a flare in the disease that feels like the fire from a dragon – was established as a not-for-profit on May 6 last year, with Mr Gill and another well-known eHealth expert, Denis Tebbutt, as co-directors. Former AMA president Mukesh Haikerwal is the organisation's patron.
It already has four corporate supporters and Mr Gill is in discussions with others, as the plan is to be completely independent of government funding and free to users.
The philosophy behind the site is to be patient-centric with an emphasis on members coordinating and organising their own care. And what Dragon Claw promises do that no other site or organisation in the world is currently providing is use an algorithm to plot the progression of the disease and track the emergence of co-morbidities, with the system able to present information in a customised way.
In future, another algorithm will be built that will enable members to upload a number of different physical measurements, with the ability to then gauge the combination of clinical and allied health support that the individual might need.
And when financing becomes available, the plan is to provide telehealth services so members can directly interact with clinicians from the different disciplines. This last element will be the only one of a planned 20 modules that will have a cost attached.
Mr Gill said version one of the site was aimed at getting members registered and building libraries of information, both official and informal, with members encouraged to tell their own stories.
“We've got support from 60 mainline medical journals to do with rheumatology and immunology – they have all agreed to support Dragon Claw,” he said. “We are going to have a library of articles and links and all of the journals are willing to be involved there.
“We are also going to have an informal library where people who've had the disease have worked out certain solutions. A good example here is that you get rashes regularly on certain medications. The GP will organise a cortisone or steroid cream but they may not work. What works is acetic acid or vinegar.
“We're going to build a knowledge base where the members themselves participate. That has already started and is running now.”
Version two of the site will include the algorithm that allows members to plot their current disease progression and to follow co-morbidities over time. This will then allow the site to recognise the individual and have customised information presented to them.
“People in the first 18 months of the disease are in crisis and they need a whole set of different services to those who are more established, like myself,” he said. “That is unique and no one does that. The second thing is that we want to include carers into the equation and no one does that either.”
Mr Gill has designed the concept for another algorithm that will allow members to upload and track between eight and 11 particular measurement attributes of the disease and present information on the different types of clinical support they might require.
“For example, muscle wastage is a common feature and one that has very bad outcomes if you don't address it,” he said. “People can measure their muscle deterioration themselves using very common tools and enter it into the system.
“Pain development over time, certain aspects of nutrition, certain aspects of gait and various other things … we can combine into an algorithm where you as a member would enter your measurements over a period of time, say 30 days, and the system will gauge the combination of clinical and allied health support you might need.
“It might be nutrition and an exercise physiologist as opposed to a gym instructor. That will generate a profile of and will say to the member, I think you need to have these sorts of services and our telehealth platform has a range of service providers that meets these criteria.
“That means that I now can manage the range of care services that I need. The GP doesn't do that. That is fairly radical.”
The development of the telehealth platform will be the most expensive part of the project, but Mr Gill foresees using a combination of technologies like Skype or WebRTC. The most important element, however, is to gather a reasonably large group of clinicians – the business case calls for about 200 – who are willing to provide online consults.
“One of the faults of telehealth is that it depends on the audience coming to the telehealth facility – in other words the patient coming to the doctor,” Mr Gill said. “That business model doesn't work very well. Dragon Claw will aggregate people with very specific needs – those three specific diseases – and be able to present them as a population group to clinicians who are connected to the internet willing to do online consults.”
He said Dragon Claw will have a large enough population group to provide a business case for clinicians to make it worth their while, but they don't necessarily have to even be located in Australia. The site is aimed at a global audience of English-speaking people, as well as people in countries like India.
“We are not trying to shake the primary relationship that I may have with my specialist or my GP. A good example is one of the people on Dragon Claw who had a flare. A flare is a massive surge of pain – it can be brought on by a range of things and it's quite common in these conditions.
“So it was a Saturday, she had a major flare which she thinks was brought on because she got her drugs mixed up, and given she is taking about 10 drugs that's not surprising. She needed to talk to a specialist but couldn't on the weekend. We at Dragon Claw would provide an online consultation service for her and the specialist doesn't need to be local.
“She could talk over her drug balance and perhaps take some remedial action and then on Monday make an appointment with her normal specialist. In the meantime the online specialist would have sent a note to the other. It is a relatively simple concept, and simple concepts bring up big ideas. We're turning the telehealth model on its head by bringing an audience to the site for clinicians.”
The telehealth module will necessarily have a payment attached as it's not likely that one-on-one video consultations will be funded by Medicare in the foreseeable future. Mr Gill said Dragon Claw would take a very small percentage of the fee to fund the platform, but all other services on the site will remain free.
“We are not aiming for any government subsidy or support – we don't want any,” he said. “This is a completely private and independent organisation. There are 20 odd modules and 19 modules will be free. The 20th will be telehealth and we'll have to run it that way because it's expensive and there's no other way to do it.”
Dragon Claw currently has four corporate sponsors: market analysis firm the NTF Group, public policy thinktank Global Access Partners (GAP), law firm Gilbert + Tobin and commercial meditation organisation Well For Life. In addition to the journals that are working with the site, Dragon Claw is managed by a formal governance committee involving two medical professors as well as a separate growth committee.
“I have to say we have had marvellous support from private enterprise that we have gone to speak with,” Mr Gill said.
The organisation has plans to sign up 5000 people with RD, lupus or JIA this year, growing to 310,000 in five years and a million and a half in 10 years. While that may sound ambitious, Mr Gill points out it is still less than 10 per cent of the eligible population.
He estimates that Dragon Claw will cost just under $200,000 a year to run, but he is not looking to fund the venture as charitable organisations like the Arthritis Foundation do through fun runs and small donations.
“Right now, what we are looking for is clinicians who are IT savvy and want to be a part of it to contact me,” he said. “We are looking for members obviously to sign up, and then we are looking for more corporate supporters, particularly on the cash side.”
Version one of the site, which has an information focus, is now live, with version two – aimed at building a knowledge community – to come on line in the first half of this year. Version three will involve developing the modules that will allow members to co-ordinate their own care, and version four will include the telehealth element.
Posted in Australian eHealth