Consumer advisory group meeting

Our Consumer Advisory Panel (CAP) gathered for a meeting on Tuesday May 31, 2011. Our CAP is made up of a diverse group (injury level, gender, age) of 8 individuals with spinal cord injuries (6 males, 2 females, 4 T level, 4 C level, 6 Caucasians, 2 African Americans; average age is 43.8). We had an emotionally charged discussion surrounding the following topics:

We provided a brief overview of all of our current studies: MN35, DRRP 1, DRRP 2, RRTC 1, RRTC 2, and Ambulation.

We discussed the CORE survey to identify areas which could be added to a future survey:
• Add peer support question to new Family History/Community Support section since many people with SCI network and learn how to deal with life from other people with SCI.
• Add a section on dental services since they felt that oral hygiene is important to overall health.
• Add involvement in accessing fitness centers in the Health section
• Add involvement in accessing a nutritionist to control weight and promote proper diet
• Add question of being provided too many supplies by DME companies to people with insurance: Medicare, Medicaid. Some participants expressed that they are provided too many supplies which adds up to a lot of financial waste to the insurance system
• Add question to ask about access to durable medical equipment: shower chairs, shower benches, modified fitness equipment, power and manual wheelchairs
• Add question about the type of matrices used in the Sleep section

We discussed possible strategies to disseminate research results of our studies including the recently completed MN35 study:
• TV ads on public or cable stations including PBS and Comcast channel 2
• Network with HASCI service coordinators throughout the state
• Post information at for profit SCI clinics such as South Eastern Spinal Clinic and Atlantic Spinal Clinic as well as public clinics
• Network with the Independent Living Centers throughout the state: DRC and DAC
• Promote Insurance phones provided to people on SSI and SSDI
• Given the involvement of some CAP participants in the Allostatic Load Study, several CAP participants would highly recommend promoting the need to address the loss of bone density in people after an SCI
• Promote use of fitness centers and post information at fitness centers
• Network with National Associations and publications- Spinal Column to make sure people in other states have access to information in SC
• Use facebook and twitter
• Identify the many newsletters for people with disabilities and submit SCI research information since these newsletters are always looking for content
• Identify and provide SCI research information to medical professionals specifically Neurologists, Urologists
• Take advantage of using SCI Awareness Month- September as a strategy to promote SCI research
• Advertise or submit research information to the Disabled Dealer Magazine, similar to Auto Trader Magazine

We discussed ways for the SCSCIA to become more involved in SCI research:
• Promote the development of a assistive technology initiative in the rural areas through SCSCIA to provide computer technology to people with SCI to encourage their involvement in Internet based support
• Promote the development of a statewide medical and health professional data base to provide information to people with SCI in need of providers
• Use SCSCIA to promote the many recreation opportunities for people in SC since many opportunities are not known until they have passed: South Easter wheelchair Games, Splash Bashes-adaptive sports days, disabled hunting opportunities, etc. This can be done through SCSCIA newsletters and website links
• Use SCSCIA to promote SCIO research and an strategy for potential SCI research participants to participate in the research studies
• Develop an Attendant Care registry to identify people who are properly trained to provide this crucial service. Providers on the registry must show proof of training. SCSCIA may be needed to facilitate this training.