Provide a practical mobile tool kit solution to Patient and Caregivers.
- Primary Focus is to equip and empower the “Newly Diagnosed” Patient and Caregiver.
- Simplify (Interpret) the language gap between medical and non medical – (The Patient and Caregiver)
- Orientate and Educating the Patient and Caregiver on Cholangiocarcinoma landscape
- Equip the Patient and Caregiver with current knowledge and newly discovered information flows.
- Empower the Patient and Caregivers with renewed control and choice.
- Connect the Patient and Caregiver to the Globally Connected Patient Communities.
How do we achieve this?
- Centralise: Continually Collect, Simplify and Centralise the Cholangiocarcinoma and related Knowledge inflow.
- Package: We create tailored and specialised packets of information that speed up the process of patient empowerment.
- Pathways: We develop informational pathways between the knowledge base and the patient and caregivers.
A Globally Connected Patient and Caregiver
- Integral Cog in the Globally Connected Patient Collective Communities.
- Distill the Collectives Knowledge into relevant useable information resources for CCA community.
We Pull it all to the centre and simplify
A knowledge base that acts as a filter/interpreter between the difficult medical language and the Patient and Caregivers need for simpler and efficient understandings.
A bottom up model that puts the Patient and Caregiver in the drivers seat.
The Knowledge base is a “Front Loaded Tool Kit” structure, which means all important information is retained on the home page via the “drop downs” or “Pop up” technology options. The purpose is to retain the vital information at your fingertips and reduce the need to continually click through multiple pages.
This strategy is especially efficient fo Patient and Caregiver users are typically on mobile devices in medical waiting rooms, treatment rooms, and hospital rooms and mobile transportation between.
This Centralised Knowledge Hub began its life as our personal library, a place to store the fast mounting information avalanche on Cholangiocarcinoma.
NOVEMBER 2016: Claire and I began from a base line of shock, overwhelm and disruption. We could not spell or pronounce such a word as Cholangiocarcinoma, which just added to our anxiety, stripping away any remaining poise or composure that we had. Claire began by just blindly digging with Doctor Google, she had no idea of what was to come, as she moved further into an endless search for tangible information of such a rare cancer.
Most search results lead Claire in the direction of the USA, Thailand and Vietnam. Other parts of the world including UK and Europe were very lean on useful data and projected more dire interpretations.
Claire’s searches for information was generating significant piles if not mountains of disconnected and random facts and theory’s – she needed help, so I built a basic website to house and file it all, our personal library on Cholangiocarcinoma.
As I felt up to it I categorised an evolved the website to suit our purposes, it also became clear that we should share our knowledge with others in the same predicament. We wanted to give other CC Warriors a better starting point than we had. The website was also a great place to house my own story and evolve it as I progressed through my journey, which I named “My Walk with Cholangio the Beast.”
Thats it…thats the origins of this Centralised Knowledge Hub on Cholangiocarcinoma. We have evolved this is Australasian based and with a view to align with other better resourced organisations such as CCF – The Cholangiocarcinoma Foundation based in the USA.