Key Objective: Support the RHF in its efforts to gather detailed information about the health status and quality of life of Albertans living with SCI and to make these data available in a format that protects individual privacy and informs research.
A primary focus of the SCISN is the development of a research infrastructure. The Rick Hansen Spinal Cord Injury Registry (RHSCIR) is a fundamental component of this strategy that provides invaluable information by tracking, storing and relating data about clinical treatments provided to people with SCI. This information can be used by researchers and clinicians to better understand the impact and effectiveness of specific medical interventions over the course of an individual’s lifetime.
As the Registry grows, the data collected will help to establish and validate best practices that will ultimately provide better outcomes for individuals with SCI, help improve quality of life and lead to a cure for SCI in the future. The Registry currently has active sites in British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Additional sites in Saskatchewan and Newfoundland are in the planning stages.
There is an Executive Scientific Committee which leads the project. Dr. John Hurlbert from the Foothills Hospital in Calgary is a member.
The RHSCIR currently has over 700 registered participants from across Canada. Data sharing agreements are in place in Alberta with the Foothills Medical Centre in Calgary (acute care and rehabilitation programs), the Glenrose Rehabilitation Hospital in Edmonton, the Royal Alexandra Hospital in Edmonton (acute care), and the University of Alberta Hospital in Edmonton (acute care). Due to issues with arranging funding, the project has been stalled in both Calgary and Edmonton since starting in 2005/2006; Calgary has enrolled 93 cases; Edmonton has enrolled 42 to date.
New coordinators have been appointed in both Calgary and Edmonton. A formal data sharing agreement was signed with Calgary and funding provided for two years. It is anticipated that data sharing and funding agreements will be signed in Edmonton in early 2009/2010.
Currently, the RHSCIR is registering individuals who suffer a traumatic spinal cord injury (SCI) and are admitted to a participating health care site in Canada. Information is only collected on those individuals who voluntarily give their informed consent. With agreements in place, data collection should be more consistent between acute care and rehabilitation. Communication between these two areas has improved and the national operations group is able to provide better support and direction. All of this should lead to increased enrolment in the project.
Future plans include sharing the data collected thus far with the national operations group so that a baseline can be created. A web-based platform is expected to be completed in 2010.
The RHSCIR contains:
• Patient Identification and Linking Data
• Demographic/Socio - Economic Data
• Diagnostic Data
• Procedural Data
• Treatment Data
• Outcome Data (i.e. quality of life)
Tuesday, December 1, 2009
Active Living Initiatives - to November 2009
Key Objective: Increase the number of Albertans with SCI who have incorporated regular physical activity effectively into their daily lives.
The Alberta Active Living Strategy was created with the input of 25 Alberta disability organizations with an interest in active living for persons with disabilities. $500,000 from the initial $12 million Alberta government commitment has been protected for Active Living Initiatives. The purpose or intention of the Strategy is to provide Active Living leadership from the disability community plus overall guidance on vision, needs and priorities for allocation of this half million dollar fund.
The Active Living Executive Task Team (ALETT) was established to provide recommendations each year to the Alberta SCI Solutions Alliance on priorities, best ways/means to facilitate Active Living lifestyles for individuals with Spinal Cord Injury and other related physical disabilities.
The Active Living Alliance Strategy report was completed in March 2008 and is available by contacting CPA AB at 780-424-6312.
Active Living Fund - Progress to Date
The Alberta Active Living Strategy was created with the input of 25 Alberta disability organizations with an interest in active living for persons with disabilities. $500,000 from the initial $12 million Alberta government commitment has been protected for Active Living Initiatives. The purpose or intention of the Strategy is to provide Active Living leadership from the disability community plus overall guidance on vision, needs and priorities for allocation of this half million dollar fund.
The Active Living Executive Task Team (ALETT) was established to provide recommendations each year to the Alberta SCI Solutions Alliance on priorities, best ways/means to facilitate Active Living lifestyles for individuals with Spinal Cord Injury and other related physical disabilities.
The Active Living Alliance Strategy report was completed in March 2008 and is available by contacting CPA AB at 780-424-6312.
Active Living Fund - Progress to Date
- guidelines and application forms were developed, consistent with the Active Living Strategy
- call for applications made with submission deadline set for November 20, 2009
- given potential for conflict of interest among ALETT members, ALETT recommended that the Secretariat would adjudicate the review process
Strengthening the Peer Support Program - 2008/2009
Key Objective: Peer supports will be available to 100% of Albertans living with SCI and their families.
The provincial peer support program is an initiative of CPA AB. The program is referred to as the “Odyssey Peer Program – Embrace the Journey”. Program delivery capacity has significantly increased this year with the allocation of resources which allow for two full time program coordinators – one based in Calgary and one based in Edmonton. In the past, program coordination was shared by the client service coordinators and thus the scope of the program activities and outcomes were more limited and based out of Calgary and Edmonton. This year with the support of the coordinators, elements of the Peer Program have expanded to the regional offices with positive impact on clients in those communities. The program aims to connect individuals with SCI, particularly those who are newly injured, with a network of their peers from whom they can obtain support and advice. CPA AB accomplishes this through a variety of activities that facilitate peer connections and peer mentorship, such as group events and the client video profiles on the web site. Twenty new videos were created this past year which profile client success stories in overcoming barriers to their goals for living and participating in the community. New clients were also matched with peer mentors based on requests for this opportunity. A future goal for the program is to include peer mentorship into every new client service plan proactively. Currently the majority of requests for mentorship come in as a result of a client or family member viewing one of the client videos. This past year, more than 20,000 visitors viewed client profiles on the CPA website. Feedback around the positive impact of the videos has been received from persons with SCI around the world.
Peer Program Activities:
Calgary
If you are interested in becoming involved in the Peer Programs offered through the Canadian Paraplegic Association, please visit their website or call the Edmonton Office at 780-424-6312, or the Calgary office at 403-228-3001. Check out the Odyssey Peer Program Videos here.
The provincial peer support program is an initiative of CPA AB. The program is referred to as the “Odyssey Peer Program – Embrace the Journey”. Program delivery capacity has significantly increased this year with the allocation of resources which allow for two full time program coordinators – one based in Calgary and one based in Edmonton. In the past, program coordination was shared by the client service coordinators and thus the scope of the program activities and outcomes were more limited and based out of Calgary and Edmonton. This year with the support of the coordinators, elements of the Peer Program have expanded to the regional offices with positive impact on clients in those communities. The program aims to connect individuals with SCI, particularly those who are newly injured, with a network of their peers from whom they can obtain support and advice. CPA AB accomplishes this through a variety of activities that facilitate peer connections and peer mentorship, such as group events and the client video profiles on the web site. Twenty new videos were created this past year which profile client success stories in overcoming barriers to their goals for living and participating in the community. New clients were also matched with peer mentors based on requests for this opportunity. A future goal for the program is to include peer mentorship into every new client service plan proactively. Currently the majority of requests for mentorship come in as a result of a client or family member viewing one of the client videos. This past year, more than 20,000 visitors viewed client profiles on the CPA website. Feedback around the positive impact of the videos has been received from persons with SCI around the world.
Peer Program Activities:
Calgary
- Held 10 peer events between April 1, 2008 and March 31, 2009. There were a total of 262 participants.
- This year’s Peer Events included: Wills, Skin Care, Family Fun Day, Chili Cook-Off, Sailing, Christmas Dinner, Pot Luck & Movie Night, Disabled Film Festival, Wheelchair Fencing, and Disability Tax. Introduced Wheelchair Fencing. It was a success, with clients wanting to do more and even wanting to join the club. The fencing event will be repeated in the fall because of the positive feedback received from the group who attended.
- An evaluation of the peer program was conducted under the direction of two graduate students from the U of C during the winter academic semester. A comprehensive report was produced in March 2009 and the recommendations will guide program expansion in the future.
- CPA AB did not have a Calgary Peer Conference or Car Rally because of staff changes in the fall of 2008 but planning has taken place for a Car Rally on September 12, 2009 and a Peer Conference in the spring of 2010.
- An empowerment training pilot project – “Discovering the Power in Me” was hosted in Calgary in November with 20 participants. The workshop was hosted by CPA AB with facilitators from The Pacific Institute.
- Monthly Peer Events and Family support group meetings took place between April 2008 – March 2009.
- Held ten peer evenings, including one entitled “A Night of Love” with media coverage.
- The “Rockin’ Reunion” in September saw about 110 participants and was enjoyed by all. Attendance at the Family support evening has decreased, so it was moved from the CPA AB office to the Glenrose Rehabilitation Hospital, on the first Wednesday of the month to coincide with the Peer Learning Evening.
- A one-day Peer Conference in Edmonton is being planned for September 2009.
- A two day “Discovering the Power in Me” Workshop was hosted in Edmonton by CPA (AB) with 16 participants. Feedback was very positive. Client service coordinators will follow-up to support participants to practice their strategies for behavior change.
- Held the first Peer Conference in Grande Prairie (Sept. 2008) with a theme of CPA AB awareness. The conference provided members and community with information about CPA AB services, Alberta Regional Health Authority Services, and other municipal and local NGO services. The keynote address was a workshop on “Understanding the Trauma of SCI.”
- Peer conferences were planned for Lethbridge, Medicine Hat, and Red Deer (Spring 2009).
- Quarterly Aboriginal peer events are now being hosted in Edmonton and Calgary. This commenced in January 09. These events have attracted persons from outside the cities.
- A “Discovering the Power in Me” personal empowerment workshop for people with SCI, was planned for May 2009 in Grande Prairie.
If you are interested in becoming involved in the Peer Programs offered through the Canadian Paraplegic Association, please visit their website or call the Edmonton Office at 780-424-6312, or the Calgary office at 403-228-3001. Check out the Odyssey Peer Program Videos here.
Highlights of Achievements in 2008/2009
The $12 million Government of Alberta contribution enabled partners in the Alberta SCI Solutions Initiative to achieve the following in 2008/2009:
Increase the capacity of CPA AB to meet the needs of individuals with SCI in communities of all sizes throughout the province, including the Aboriginal population.
Four Client Solutions Coordinator (CSC) positions (a total of 3.0 FTE) were funded; seven Community Development Coordinator positions (a total of 4.7 FTE), and two full-time peer coordinator positions were funded. CSCs served 90 clients with disabilities and their families. Without the Government investment, it would not have been possible for CPA AB to support individuals with SCI and their families to the extent it has. Having local staff available is the best way to ensure high quality service to clients and active involvement in community issues (e.g. transportation, and accessible housing).
Commit $134,208 to projects designed to meet the immediate, priority needs of Albertans with SCI and the communities in which they live.
Half of this money ($67, 104) was raised by communities through Rick Hansen Wheels in Motion (RHWIM) events. Successful proposals were matched dollar for dollar with money from the provincial Solutions Fund. In all, 28 projects and 3 individuals received funding for such things as adaptive fitness programs, education costs, wheelchair accessible vans, and accessible playground flooring. These funds are making a direct impact on Albertans with SCI of all ages and in communities throughout the province.
Increase capacity to implement initiatives in the Alberta Active Living Strategy by creating an Active Living Executive Task Team.
This team is responsible for overseeing the distribution of funds for active living projects and will provide the impetus needed to implement other initiatives in the report (which was completed in March 2008.) The committee has decided to put out a call for proposals in summer 2009.
Increase the national visibility and influence of Alberta researchers and practitioners in the field of SCI.
Provincial representatives were appointed to three national SCI Translational Research Leadership Teams under the auspices of the SCISN. This means that Alberta experts are now involved in setting national direction in the areas of SCI Acute Care and Treatment, SCI Rehabilitation, and Community Integration. In turn, Alberta initiatives will benefit from close ties with a national network of experts and access to leading research findings and best practices. Members of the Leadership Teams are nationally and internationally recognized as leaders in their fields.
Strengthen the contribution of Alberta hospitals and rehabilitation programs to the Rick Hansen Spinal Cord Injury Registry (RHSCIR).
RHSCIR reached formal data sharing arrangements with four Alberta institutions (acute care and rehabilitation) and reached an understanding regarding the need to fund data collection staff. These accomplishments assure that comprehensive, high quality data on individuals with SCI in Alberta will be available to the research community in the near future.
Increase awareness of SCI among the general public in Alberta.
The number of Alberta SCI Ambassadors working with the RHF to increase public awareness of SCI increased to 26. Together, they delivered 18 presentations, participated in 27 media events, and spoke publicly at 13 RHWIM events.
Ensure that all Alberta elementary and secondary students have the opportunity, via Rick Hansen’s story, to learn about the great potential of people with SCI and other disabilities.
Staff of the RHF enrolled 70 Alberta schools in the Rick Hansen School Program, designed to teach social responsibility and disability awareness. This is an enormous increase over the 14 schools that participated in the program in 2007. Every K-12 school in Alberta has the RH School Program resources in their library, whether they have chosen to participate in the full program or not.
Finalize governance, accountability, and delivery structures and systems.
The Alberta Paraplegic Foundation (APF) was granted financial oversight for the Alberta SCI Solutions Alliance and the Alberta SCI Research Team. The Canadian Paraplegic Association (Alberta) (CPA AB) was appointed secretariat to both the Alliance and the Research Team.
Increase the capacity of CPA AB to meet the needs of individuals with SCI in communities of all sizes throughout the province, including the Aboriginal population.
Four Client Solutions Coordinator (CSC) positions (a total of 3.0 FTE) were funded; seven Community Development Coordinator positions (a total of 4.7 FTE), and two full-time peer coordinator positions were funded. CSCs served 90 clients with disabilities and their families. Without the Government investment, it would not have been possible for CPA AB to support individuals with SCI and their families to the extent it has. Having local staff available is the best way to ensure high quality service to clients and active involvement in community issues (e.g. transportation, and accessible housing).
Commit $134,208 to projects designed to meet the immediate, priority needs of Albertans with SCI and the communities in which they live.
Half of this money ($67, 104) was raised by communities through Rick Hansen Wheels in Motion (RHWIM) events. Successful proposals were matched dollar for dollar with money from the provincial Solutions Fund. In all, 28 projects and 3 individuals received funding for such things as adaptive fitness programs, education costs, wheelchair accessible vans, and accessible playground flooring. These funds are making a direct impact on Albertans with SCI of all ages and in communities throughout the province.
Increase capacity to implement initiatives in the Alberta Active Living Strategy by creating an Active Living Executive Task Team.
This team is responsible for overseeing the distribution of funds for active living projects and will provide the impetus needed to implement other initiatives in the report (which was completed in March 2008.) The committee has decided to put out a call for proposals in summer 2009.
Increase the national visibility and influence of Alberta researchers and practitioners in the field of SCI.
Provincial representatives were appointed to three national SCI Translational Research Leadership Teams under the auspices of the SCISN. This means that Alberta experts are now involved in setting national direction in the areas of SCI Acute Care and Treatment, SCI Rehabilitation, and Community Integration. In turn, Alberta initiatives will benefit from close ties with a national network of experts and access to leading research findings and best practices. Members of the Leadership Teams are nationally and internationally recognized as leaders in their fields.
Strengthen the contribution of Alberta hospitals and rehabilitation programs to the Rick Hansen Spinal Cord Injury Registry (RHSCIR).
RHSCIR reached formal data sharing arrangements with four Alberta institutions (acute care and rehabilitation) and reached an understanding regarding the need to fund data collection staff. These accomplishments assure that comprehensive, high quality data on individuals with SCI in Alberta will be available to the research community in the near future.
Increase awareness of SCI among the general public in Alberta.
The number of Alberta SCI Ambassadors working with the RHF to increase public awareness of SCI increased to 26. Together, they delivered 18 presentations, participated in 27 media events, and spoke publicly at 13 RHWIM events.
Ensure that all Alberta elementary and secondary students have the opportunity, via Rick Hansen’s story, to learn about the great potential of people with SCI and other disabilities.
Staff of the RHF enrolled 70 Alberta schools in the Rick Hansen School Program, designed to teach social responsibility and disability awareness. This is an enormous increase over the 14 schools that participated in the program in 2007. Every K-12 school in Alberta has the RH School Program resources in their library, whether they have chosen to participate in the full program or not.
Finalize governance, accountability, and delivery structures and systems.
The Alberta Paraplegic Foundation (APF) was granted financial oversight for the Alberta SCI Solutions Alliance and the Alberta SCI Research Team. The Canadian Paraplegic Association (Alberta) (CPA AB) was appointed secretariat to both the Alliance and the Research Team.
Leadership Teams - the Alberta SCI Initiative
We really appreciate the talent, experience and effort that our three key leadership teams bring to the table.
lists updated March 10, 2010
Alberta SCI Solutions Alliance Members
Barb Sturdy (Chair) - Caucus Communications Liaison, Government of Alberta (formerly with Culture and Community Spirit)
Christian Bagg - Calgary
Kim McDonald - Paralympic Sports Association
Patrick T. Pelligrino - Calgary
Marc Ross - Calgary
Sandy Saunders - Business Expertise Unit, Government of Alberta
Chris Schamber - Quad Design and Barrier Free Consulting
Ned Shillington - Calgary
Leanne Squair - City of Calgary
Barbara Stoesz - Glenrose Rehabilitation Hospital
Two spots on the Alliance have recently become vacant.
Alberta SCI Research Team
Cr. Steve Casha (Vice-Chair) - University of Calgary
Dr. Martin Ferguson-Pell (Chair) - University of Albreta
Dr. Vivian Mushawar (Vice-Chair) - University of Alberta
Dr. John Hurlbert - University of Calgary
Barb Stoesz - Glenrose Rehabilitation Hospital
Dr. Samuel Wiebe - University of Calgary
Dr. Jaynie Yang - University of Alberta
Active Living Executive Task Team (ALETT)
Donna Goodwin - Steadward Centre
Deb Bontus - Glenrose Rehabilitation Hospital
Nicole Cloutier - Wolverines Wheelchair Sports Assocation
Heather Crowe - City of Edmonton
David Legg - Mount Royal College
Kim McDonald - Paralympic Sports Association
Mike Sandormirsky - Wheelchair Sports Alberta
Mike Seifert - Recon Petrotechnologies Ltd.
lists updated March 10, 2010
Alberta SCI Solutions Alliance Members
Barb Sturdy (Chair) - Caucus Communications Liaison, Government of Alberta (formerly with Culture and Community Spirit)
Christian Bagg - Calgary
Kim McDonald - Paralympic Sports Association
Patrick T. Pelligrino - Calgary
Marc Ross - Calgary
Sandy Saunders - Business Expertise Unit, Government of Alberta
Chris Schamber - Quad Design and Barrier Free Consulting
Ned Shillington - Calgary
Leanne Squair - City of Calgary
Barbara Stoesz - Glenrose Rehabilitation Hospital
Two spots on the Alliance have recently become vacant.
Alberta SCI Research Team
Cr. Steve Casha (Vice-Chair) - University of Calgary
Dr. Martin Ferguson-Pell (Chair) - University of Albreta
Dr. Vivian Mushawar (Vice-Chair) - University of Alberta
Dr. John Hurlbert - University of Calgary
Barb Stoesz - Glenrose Rehabilitation Hospital
Dr. Samuel Wiebe - University of Calgary
Dr. Jaynie Yang - University of Alberta
Active Living Executive Task Team (ALETT)
Donna Goodwin - Steadward Centre
Deb Bontus - Glenrose Rehabilitation Hospital
Nicole Cloutier - Wolverines Wheelchair Sports Assocation
Heather Crowe - City of Edmonton
David Legg - Mount Royal College
Kim McDonald - Paralympic Sports Association
Mike Sandormirsky - Wheelchair Sports Alberta
Mike Seifert - Recon Petrotechnologies Ltd.
How the Alberta SCI Initiative is Structured
The Alberta SCI Initiative is simply the implementation of the Alberta Proposal, 'Going Forward Together'; a 2007 proposal prepared by the Rick Hansen Foundation (RHF) and Alberta SCI stakeholders as part of the '20th Anniversary Legacy Initiative'. The Alberta Proposal resulted in an investment of $12 million over five years and a related agreement between the Government of Alberta and RHF. The Initiative is fully funded by this Alberta Contribution; there are no other funders at this time.
The Alberta Paraplegic Foundation (The APF) is the legal entity responsible to the RHF for management of Alberta's contribution, consistent with the strategies and priorities contained in the Alberta Proposal. The APF has created two committees, the Alberta SCI Solutions Alliance and the Alberta SCI Research Team, to provide advice and mentorship for the project. The Canadian Paraplegic Association (Alberta) has been retained to provide secretariat services to The APF, the Alberta SCI Solutions Alliance and the Alberta SCI Research Team with regard to the Initiative and related activities.
Each year, The APF submits a Business Plan to the RHF and indirectly to its partner organization, the SCI Solutions Network. Funding for the year is released based on acceptance of this plan. Together the RHF and The APF prepare six month activity reports and an annual report to the Government of Alberta.
The Alberta Proposla was presented in four parts, each with its own clear goal. The APF assumes responsibility for management of the first two and receives funding from RHF accordingly; the remaining two are currently managed by the RHF, who reports independently (but through the same document) to the Government of Alberta.
The Alberta Paraplegic Foundation (The APF) is the legal entity responsible to the RHF for management of Alberta's contribution, consistent with the strategies and priorities contained in the Alberta Proposal. The APF has created two committees, the Alberta SCI Solutions Alliance and the Alberta SCI Research Team, to provide advice and mentorship for the project. The Canadian Paraplegic Association (Alberta) has been retained to provide secretariat services to The APF, the Alberta SCI Solutions Alliance and the Alberta SCI Research Team with regard to the Initiative and related activities.
Each year, The APF submits a Business Plan to the RHF and indirectly to its partner organization, the SCI Solutions Network. Funding for the year is released based on acceptance of this plan. Together the RHF and The APF prepare six month activity reports and an annual report to the Government of Alberta.
The Alberta Proposla was presented in four parts, each with its own clear goal. The APF assumes responsibility for management of the first two and receives funding from RHF accordingly; the remaining two are currently managed by the RHF, who reports independently (but through the same document) to the Government of Alberta.Overview of the Alberta Proposal
The Government of Alberta was asked to, and later agreed to make a $12 million Alberta Contribution over five years - an investment in the wellbeing of persons living with SCI and to collaborative systemic improvement of SCI services and research in the province.
The Alberta Proposal had four components:
- Solutions That Work - to create and implement solutions that respond to the priority needs of people with SCI and related disasbilities in Alberta
- SCI Translational Research and Infrastructure - to leverage research excellence in Alberta by sharing resources and building national linkages to accelerate translation of new knowledge into best practices
- Community Engagement and Support - to build understanding of and investment in the needs of persons with SCI in Alberta and the Canadian commitment to full citizenship for persons with disabilities
- RHF Leadership - to apply RHF leadership, expertise and coordiation experience to Alberta Solutions and related processes.
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