Why have you started Dragon Claw?
I am angry about the way people with serious chronic disease are treated by the health system. Our needs are quite different from acute patients as we need long-term co-ordinated support from many different clinicians but this is not recognised in action. I have noticed this problem in many other countries. Dragon Claw attempts to remedy this as we build and develop the site for worldwide access. Please journey with us.
Who are you?
My name is Michael; I have severe rheumatoid disease and am the founder of Dragon Claw. I live in Sydney, Australia with my wife. There are many people working on the project without fee or salary. Dragon Claw is a national charity registered with the Australian Charities and not-for-profit Commission with ANB 73621371775 so your donation is fully tax deductible.
Why would I join?
You would join Dragon Claw because you want to manage your condition better and because you’d like to talk to and learn from people with a similar condition. If you have medium to severe rheumatoid disease, lupus or JIA then the site is for you. If you are a care giver needing support then the site is for you. If you are a clinician and you are interested in e-health then please register. Joining is free. Some services will eventually attract a small fee but this won’t be for a while.
Why the registration and questionnaire process?
As is common across the Internet, you need to register and define your own password. This gives us an idea who you are, how to contact you and allows us to manage the user base. It also protects your privacy. The questionnaire is not compulsory but really is essential. By completing the questionnaire we can match features closely to your needs. We can also arrange members in to different groups to allow for video meetings, online seminars and to monitor how your condition changes. Without this information the site will consider you as a ‘blank page’ and not know how best to provide services automatically. The questionnaire will be run every six months and is confidential.
Why do you use the term Rheumatoid Disease?
The word ‘arthritis’ in rheumatoid arthritis is misleading as the disease can impact a whole lot more than just joints. When you mention to someone that you have rheumatoid arthritis they simply hear and understand the word ‘arthritis’. Dragon Claw uses the phrase Rheumatoid Disease instead to specifically refer to the three conditions mentioned in Question 3 above.
Can I place useful information that others may find interesting on Dragon Claw?
Absolutely! You are encouraged to do so via the blog, by uploading a video, by telling everyone about your story (in My Story) or by participating in a video group chat (when this becomes available). You need to be polite and not mention the name of any clinician or a particular drug manufacturer. Yes, go for it and upload something. To legally protect Dragon Claw we will review your content and reserve the right to delete it if it defames, offends or is obviously wrong.
Can I contact other members of the site?
Yes! This is part of the reason for Dragon Claw – to reduce stress and isolation. It is not good to be sitting at home all alone wrapped in pain and stiffness. When you register you will be asked to allow other members to contact you. We are trying to build a community and to develop a few tools that will gather electronically people who live locally and suggest meetings and coffee events. Please give us some time to build this feature.
What happens if I don’t like something?
What of the future?
We have very big ideas and little money. We have planned for four versions of the site to be released. The sequence is broadly as follows:
Phase 1 – information focus
Phase 2 – building a knowledge community
Phase 3 – Co-ordinating of your own care
Phase 4 – online consultations with clinicians