The Rick Hansen Spinal Cord Injury Registry: Launch of a Canadian Spinal Cord Injury Database
Lise Mary A. Belanger, RN, BSN, MSN
John Cobb, BscOT
Edited by Romilda Ang, RN, MSc(A)N, CRRN
Introduction
The Rick Hansen Spinal Cord Injury Registry (RHSCIR), a Canadian initiative undertaken by the Rick Hansen Man in Motion Foundation (RHMIMF), was piloted at Vancouver General Hospital and the GF Strong Rehabilitation Centre in Vancouver, British Columbia in June 2004. The Foundation’s vision is, “A world in which people with spinal cord injury (SCI) can return to full physical function.” Its mission is to:
“Accelerate the discovery of cures for SCI by leading the translation of promising research discoveries into proven therapies and treatments to benefit people with spinal cord injury enabling full recovery of physical function” (The Rick Hansen Spinal Cord Injury User Manual, Version, 2005).
The RHSCIR has been created to further this vision and mission. The RHSCIR will be used as a tool to collect and store comprehensive, nationwide (i.e., Canadian) SCI data (e.g., demographics, injury details, functional outcomes, quality of life, etc.) for the purpose of improving care and clinical outcomes. It will promote, encourage, and support the pursuit of excellence in SCI health care management.
Confidentiality
The RHSCIR is committed to upholding Canadian federal and provincial guidelines for privacy, confidentiality, and security. All persons with SCI who participate in the RHSCIR provide informed consent.
Information is collected through chart abstraction and direct contact with the individual with SCI. A variety of data collecting tools and methods are used (e.g., standard assessment tools, reports, questionnaires, face-to-face interview, and follow-up telephone interviews). Information will be collected over the life span of the individual beginning in acute care, proceeding through the rehabilitation phase of care, and continuing throughout life once the individual has returned to his/her community. Data collection will cease when the individual chooses to stop participating or dies. Following an appropriate authorization process, information will be available to health care providers, researchers, managers and decision makers, and consumers to support the pursuit of excellence in SCI health care management.
Goals of the RHSCIR
The goals of the RHSCIR are to remain current with changing trends and issues in health care management and to maintain quality data and information. In addition, the RHSCIR is committed to supporting the development of a comprehensive international SCI dataset. Currently, all of the data fields identified for the recently proposed international SCI core dataset have been integrated into the RHSCIR Core Dataset. The objectives of the RHSCIR are: to provide support for advances in clinical practice and research activities; to enhance the quality improvement process; and to facilitate partnerships between key stakeholders in SCI care.
Stakeholders in the RHSCIR
Key stakeholders in the RHSCIR include health care providers, researchers, managers and decision-makers, and consumers. Health care providers will consult the RHSCIR as a tool to gauge the effectiveness of clinical interventions in the acute, rehabilitation, and community settings. Researchers will use the RHSCIR to identify and validate research opportunities, to aid their pursuit of funding and industry partnerships, and ultimately support leading edge research that facilitates the development and validation of effective intervention and therapies. Managers and decision makers will consult the RHSCIR for data related to system performance, service planning, and developing effective health policy. Consumers will benefit from the RHSCIR because it will house better information about their status and needs, and provide them with opportunities to influence and participate in research and service planning.
Infrastructure in the RHSCIR
The Registry infrastructure currently includes a Project Steering Committee, Project Advisory Committee, and Project Development Team.
The Project Steering Committee is composed of representatives from the RHMIMF, the International Collaboration on Repair Discoveries, the BC Paraplegic Foundation, the Ontario Neurotrauma Foundation, and other interested organizations. The Project Advisory Committee is composed of representatives from various stakeholder groups with an interest in the development and use of the RHSCIR, including: clinical experts, physicians, and directors/managers of SCI programs.
The Project Development Team is composed of advanced practice clinicians, experts in the fields of information management, systems development, and project management. It is important to note that the RHSCIR has had ongoing consultation with various organizations, hospitals, and task groups across Canada and continues to seek national/international input.
Data Collection
The RHSCIR has been developed to support both local (i.e., site specific) and central (i.e., national) data collection. The RHSCIR-Central is the database that houses all the information collected by all centers participating in the project. There is one Central RHSCIR. The RHSCIR-Local is the site-specific database of a center that is a participant in the Registry. There are as many Local Registries as there are participating centers. The RHSCIR-Local is entirely separate from the RHSCIR-Central and maintained by the participating center with technical support being provided by the RHSCIR-Central.
Data Collection Procedures
Each participating center possesses resources necessary for data collection such as: RHSCIR computer software; information manuals; data collection forms; patient and family information; and informed consent packages. Individual centers are able to keep and maintain a copy of the data they collect. Participating centers can use this local information to improve the quality of service delivery at their particular site for purposes of quality improvement, and research efforts.
Registry assistants and health record analysts at each participating center will collect data through a process of manual data collection, including chart abstraction and direct contact with the individual with SCI. Once manually collected, all data is entered via computer into an electronic record that is exported to the database of the RHSCIR. This process will be repeated for each individual with SCI who is admitted to a center participating in the RHSCIR project. The RHSCIR will also house data collected via linkages with other databases such as: the Ministry of Health, the Canadian Institute for Health Information, and provincial trauma registries.
Piloting the RHSCIR
To implement the pilot in Vancouver, British Columbia, a process was developed to integrate RHSCIR enrollment and data collection into the health care continuum. This included: documenting patient-flow through the health care system from the time of injury until discharge to community (see Figure 1); development of a process for approaching persons with SCI to gain informed consent; development of a data collection process for face-to-face interviews and chart abstraction; and development of an web-based participant tracking system. In addition, a user manual was developed to describe the RHSCIR, the data to be collected and all of the supporting structures, processes, documents and educational resources.
Summary
Following the successful 2004 pilot in Vancouver, British Columbia, the RHSCIR process was evaluated and updated and work began to implement it at the Foothills Hospital in Calgary, Alberta. In March 2005, the Foothills site will enroll their first participant in the RHSCIR. Already, sites in other provinces including Manitoba, Ontario, and Newfoundland are expressing interest in participating in the RHSCIR. Learn more about RHSCIR at www.rickhansenregistry.org.
References
The Rick Hansen Spinal Cord Injury Registry. (2004). The Rick Hansen Spinal Cord Injury User Manual (version, 2005). Vancouver, BC: Author.
Lise Mary Belanger, RN, BSN, MSN, is a clinical nurse specialist in the Acute Spine Program, Vancouver General Hospital & Clinical Consultant, Rick Hansen Spinal Cord Injury Registry.
John Cobb, BScOT, is an occupational therapist in the Acute Spine Program, Vancouver General Hospital & Clinical Consultant, Rick Hansen Spinal Cord Injury Registry.
Romilda Ang, RN, MSc(A)N, CRRN, is patient services manager of at the Acute Spine Program and Wound Care Program for People with Spinal Cord Injuries, Vancouver Coastal Health Authority in Vancouver, British Columbia.
The editor of Innovation Station welcomes your input. Please contact Romilda Ang, at romilda.ang@vch.ca with comments, questions, and suggestions.