Kara at CDNCoreis creating an Online Health Education Platform for Chronic Disorders
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All of us will be a patient and / or a caregiver at some point in our lives.Welcome to my Patreon page – first off a little about me and then a little more about my project “Chronic Disorders Network Core (CDNC)” www.cdncore.com!
I have been interested in science and health research as long as I can remember. As a child I would look forward to watching CBC’s Nature of Things with David Suzuki and Wonderstruck with Bob McDonald. After high school I completed my BSc in Biology and then went on to complete a MSc with a focus in Epidemiology and Immunology. After grad school I worked for and with different levels of government in population health and epidemiology on both acute and chronic disease surveillance before specializing in health information systems and clinical informatics.
In 2011 my “eureka” moment for CDNC came to me in a quick flash while folding laundry. Little did I know then that the “idea” was actually the easiest and most straightforward part of my CDNC journey.
Due to my personal, educational, and work experience I had been fully immersed in different aspects and areas of the health field and health research in a relatively short period of time. I knew that chronic disorders were extremely prevalent and becoming more so every year; that government often struggled to identify all of the people within their communities with one or more chronic disorders; and that they also had difficulty determining what all of the requirements and special needs of patients and their caregivers were. In addition, I knew that although many organizations, resources, clinical trials, and educational material existed, patients and caregivers often struggled to easily identify what was available to them and where.
I was also aware that although one group of organizations within a province or city may be very familiar with one another and cross promote each other’s efforts and services the same could not always be said for organizations in a different city, province, or country.
So after my initial "eureka" moment I got straight to work, developed my plan for my web-portal CDNC, hired Bang Innovative - my developers, applied to and received some grant funding from the NRC, and in the fall of 2013 released CDNC version 1.0 (for a description of CDNC see below). However, as I had developed CDNC to be a web-portal for all types of chronic disorders I did not have only one type of stakeholder group or promoter. My plan for self-sustainment relied upon being able to generate revenue from focused advertising and eventually aggregating and summarizing data from the embedded survey questionnaires. Alone I had taken CDNC as far as I could at the time.
Fast forward to 2017 and I was approached by a patient advocacy group from Alberta, Canada who were interested in creating a platform similar to CDNC. Rather than go it alone and start from scratch they decided to provide me with the necessary funding so that I could upgrade CDNC to CDNC 2.0! Now in 2018 with a new look and feel and a clinical trial search function on its way, CDNC will be ready to take the world by storm :)
However, to keep this momentum going requires ongoing funding. If you have taken some time to explore CDNC and would like to see it continue, grow, and improve please consider supporting us.
We have many ideas on how to improve and expand CDNC so that it can become a valued resource to patients with chronic disorders as well as their caregivers and all other stakeholders i.e. health professionals, non-profit and government organizations etc.
At CDNC we believe in synergies not silos.
CDNC is a web-portal where members can access and share information about chronic disorders.
CDNC values quality research and information and supports knowledge sharing. Although the internet contains a wealth of information for those with chronic disorders and their caregivers, at times it can be difficult to locate the exact information on the disorder(s) of interest to them.
This web-portal provides members with access to the following:
- Articles & Reports Library
- Organizations & Resources Library
- Clinical Trials Search Function
CDNC members who are professionals in their fields can upload information and links to the two libraries. All CDNC members are able to search the libraries.
CDNC also provides those with chronic disorders and their caregivers the opportunity to share information about their experiences dealing and living with chronic disorders, via survey questionnaires. This information can then be aggregated and summarized to help inform key stakeholders about the realities of how chronic disorders affect the lives of those living with them and perhaps shed light on contributing factors to the origin of these disorders. This information can also be used to help plan or structure resources that are aimed at improving the lives of those living with chronic disorders.
A key strength of this network is its ability to collect information about chronic disorders that are not readily monitored at the population level and where statistics are difficult to obtain. An example of this is brain injuries. Although brain injuries are very prevalent in Canada, stakeholders have typically had to extrapolate data using international statistics to estimate the prevalence in Canada. As most people with brain injuries are living in the community, they do not always have direct contact with the medical system on an ongoing basis or in a manner that is captured for reporting (e.g. hospital admissions).
An additional strength of CDNC is the ability to collect information about the patient members who have more than one chronic disorder. It is known that those with diabetes are at a higher risk of developing hypertension; however, not all comorbidities1 have been as well established. CDNC is interested in all chronic conditions and individuals who have more than one chronic disorder can be flagged and the types of chronic disorders that “co-exist” within these sub-groups can be assessed.
Over time as the membership grows and individuals with chronic disorders complete the online survey questionnaires CDNC will be able to aggregate this data and become a reliable source for chronic disorders reporting and statistics.
Chronic Disorders: all non-infectious or non-communicable chronic diseases and conditions.
1.Comorbidity or comorbidities: one or more additional disorders which “co-exist” with the primary disorder, or disorder that was first diagnosed.
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