Spine and Brain Advocate will act as a Craniocervical Junction (CCJ) Instability Champion, leading awareness and advocating change at all levels.
Craniocervical Junction (CCJ) Instability cases are exploding around the world but there aren’t enough knowledgable, trained doctors to help patients. Raising CCI / AAI Awareness… if we don’t do it, nobody will!
This one-of-a-kind initiative is raising CCJ Instability awareness for all patients, no matter how they acquired it (trauma, infection or congenital). Workbooks and e-Learning are provided to help patients to self-advocate. Spine and Brain Advocate will lead awareness campaigns and support 2nd medical opinions. It will also organize the Patient Experience Survey and lobby for healthcare changes.
The following are key pillars to leading change:
1. PROMOTE SELF-ADVOCACY
• Help members to self-advocate for appropriate CCJ investigations and treatments with helpful workbooks, tools and eLearning.
• 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, Fundraisers and Q&A Sessions.
• Build a large Craniocervical Junction Instability community.
3. SUPPORT MULTIPLE MEDICAL OPINIONS
• Educating patients that 2nd medical opinions and comprehensive investigations are essential for the most accurate diagnosis and best treatment plan.
• Expert Radiologists have agreed to provide comprehensive, detailed Radiology Reports.
4. PATIENT EXPERIENCE SURVEY
• Promote and gathering of data through a Patient Experience Survey, creating statistics that tell the “Patient Community’s Collective Story”.
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 expect to see information and government lobbying?
It depends. A large amount of Patient Experience Data is needed in order to develop a solid case for change. The goal is to have 3000 patient surveys completed.
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.
CRANIOCERVICAL JUNCTION (CCJ) INSTABILITY CHAMPION