Spine and Brain Advocate will act as a craniocervical instability (CCI) change champion, leading awareness and advocating change at all levels. This one-of-a-kind initiative is raising CCI awareness for all patients, no matter how they acquired it (trauma, infection or congenital).
Medically based information with cited references is provided in the CCI Learning Centre to help patients self-advocate.
Spine and Brain Advocate will also lead awareness campaigns and support patients to obtain legitimate 2nd Opinion Radiology Reports with the goal to help patients open doors to local healthcare.
It also initiated a CCJ Patient Experience Survey and when enough data has been gathered, the statistics will be used for lobbing for healthcare changes worldwide.
THE FOLLOWING ARE SPINE AND BRAIN ADVOCATE’S 5 KEY PILLARS TO LEADING HEALTHCARE CHANGES:
1. Promote Self-Advocacy
Help members of the CCI community and their families and friends to self-advocate for appropriate spine and brain investigations and treatments with helpful information in the CCI Learning Center under the concept that knowledge is power and science is based in facts and best practices.
Show support by proudly wearing and handing out Craniocervical Instability (CCI) Awareness Ribbons.
2. Lead Awareness Campaigns
Social Media Campaigns and Events such as Conferences and Q&A Sessions.
Build a large Craniocervical Junction Instability community.
3. Support Multiple Medical Opinions
Educating patients with the knowledge that comprehensive investigations and multiple expert medical opinions are essential for an individual’s most accurate diagnosis and best treatment plan.
CCI expert Radiologists have agreed to provide comprehensive, detailed 2nd Opinion Radiology Reports.
4. Patient Experience Survey
Promote and gathering of data through the CCJ Patient Experience Survey, creating statistics that tell the “Patient Community’s Collective Story”.
How will personal medical information be handled and stored?
The purpose of gathering patient experience information will be to tell the patient community’s story. All personal information is managed securely using state-of-the-art technology. Employees or contractors sign confidentiality agreements. For more information, visit Terms, Conditions and Policies.
5. Advocate Healthcare Changes
With the support of statistical and lobbying experts, a proposal for healthcare changes will be developed and presented to key stakeholders.
When can members of the CCI community expect to see information and government lobbying?
It depends. A large amount of CCJ Patient Experience data is needed in order to develop a solid case for change. The goal is to have 3000 patient surveys completed.