Wheelchair Skills Program: Enhancing Knowledge Translation through the Internet Michael McAllister1, Amir Feridooni1, R. Lee Kirby2, Donald A. MacLeod3, Brian Paul4, and Cher Smith3 1
Faculty of Computer Science, Dalhousie University, 6050 University Ave., Halifax, NS, Canada, {mcallist, amir}@cs.dal.ca 2
Division of Physical Medicine & Rehabilitation, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada,
[email protected] 3
Capital District Health Cher.Smith}cdha.nshealth.ca
Authority,
Halifax,
NS,
Canada,
{Donald.Macleod,
4
Faculty of Medicine, Dalhousie University, 5849 University Ave., Halifax, NS, Canada,
[email protected] The wheelchair skills program provides assessment and training protocols for manual wheelchair skills. The program uses the internet effectively to disseminate these protocols to an international audience. This discussion paper outlines the next steps in offering public and private web applications to improve the breadth of exposure, adoption, and impact of the program. It opens the discussion on the security and the privacy of data that is collected and stored by web applications.
Keywords Data security and privacy, web applications, wheelchair skills.
1. Introduction The wheelchair skills program (WSP), developed at Dalhousie University, has received broad support and recognition in the physical rehabilitation community for its innovation. One contributing factor to its breadth of impact is its documentation and videos available on the internet that make the program freely available to health professionals, clinicians and wheelchair users worldwide. While the WSP assessments provide valuable feedback to clinicians that help in setting rehabilitation plans, the WSP research group envisions even further benefits if clinicians can link the progress of their patients with trends in similar patients or if they can more easily track the progress of individual patients. The WSP research group is thus evolving their online presence from the dissemination of information into web-based support for the program. The goals of this evolution are twofold. First and foremost, we wish to increase the breadth of exposure, adoption, and impact of the WSP on physical rehabilitation. Second, we wish to develop a telescope that captures the trends of WSP use in continual treatment of patients to improve the data for clinicians and to refine the program. We briefly present our vision of a combination of private and public access points for the evolution of WSP content. We seek feedback on comparable approaches and on pitfalls to th
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avoid in all aspects of the project, including the context of maintaining the privacy and security of data while still providing benefits from a common pool of assessment information.
2. Wheelchair Skills Program The Wheelchair Skills Program [1] includes both assessment and training protocols. The assessment component is the Wheelchair Skills Test (WST), a comprehensive and generic instrument for the objective evaluation of manual wheelchair skills. The measurement properties of the WST have been well documented [2] and it has been used in a variety of studies. Using methodology based on the extensive motor-learning literature, the Wheelchair Skills Training Program (WSTP) is a training tool with three skill levels (indoor, outdoor and advanced) comprising a broad range of 57 individual wheelchair skills. In two randomized controlled trials, one on wheelchair users admitted for initial rehabilitation [3] and one on wheelchair users in the community [4], we found that the WSTP was safe, practical and resulted in significantly greater improvements (2-3 fold) in wheelchair skills performance than standard care. In a third randomized controlled trial, on occupational therapy students, we found that the WSTP resulted in significantly greater improvement (2-3 fold) in wheelchair skills than a standard undergraduate occupational therapy curriculum and that these skills were retained 9-12 months later [5]. Finally, as little as 50 minutes of training produced comparable improvements in wheelchair-handling skills among caregivers [6]. The WSP web site current offers descriptions, videos, and images of the assessment and training protocols. Analysis of the web logs indicates that 70% of the accesses are from North America, with the remaining 30% distributed internationally. The items of most interest are the images and videos followed closely by the actual documentation of the protocols.
3. Direction An expansion of the services offered by the current WSP web presence can potentially benefit clinicians in several ways: -
the progress of an individual through a sequence of testing and training sessions can be tracked, the performance of an individual can be compared with other cases to assess future avenues of training and rehabilitation, and trend information relevant to particular assessment results can be presented more readily.
An expanded web presence can also provide a means to collect a richer set of data, under suitable guidelines and consent, to enhance the WSP and allow further investigation into research questions. There are attractive benefits to developing these expansions in the context of an intranet within the Capital Health Authority in Halifax, Nova Scotia: an authentication system preexists, the network is isolated from the rest of the internet to ensure the privacy of the data, the user base is controlled, and there is the opportunity for such an expansion to facilitate the sharing of information among clinicians. However, such a deployment limits the potential increase in new adoptions of the WSP. Instead, we are investigating an internet-based expansion of the WSP web presence. In particular, we envision separate public (guest) and private (authenticated) entry points for clinicians (not the general public). The public entry point would provide a base web th
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application that helps an individual work through the WSP process and can locally generate an assessment summary from information that they provide online; it does not include access to personal or summarized test data. The private entry point would extend the public services to allow clinicians to save and track a patient's assessments through a series of tests and training sessions and link assessment data to trend data that is summarized (and suitably anonymized) from other assessments. The storage of the assessment data would occur on a remote site. Access through the private entry point would require prior identification and registration with the WSP maintainers. Under a suitable consent and disclosure framework yet to be established, data from the private entry point could be available for research purposes. All data from the public entry point is suspect and, at best, could be examined for broad-scale trend analysis only. Initially, there is no expectation that the public data would be stored for future use; summarizations would occur on the client computer and not be sent to the WSP site. The public entry point targets our goal of increasing adoption of the WSP. The added services offered by the private entry point are intended to provide an incentive to clinicians to register with the WSP to record the usage of the WSP, to create a cohesive user base, and to gauge the quality of data that is submitted by that user. For the WSP, the private entry point can provide additional data to improve and refine the WSP and to corroborate trends that are detected in more controlled research studies. The deployment within the WSP will be following a phased roll-out to allow us to gauge the impact that each incremental service has on our goals. The first step involves a client-side application to help with summarizing WSP assessments. No patient data is communicated across the network to ensure the privacy and security of the. The second step deploys the tracking and trending components within an intranet with a design that anticipates a subsequent internet deployment. The third step then moves towards an internet service that targets the WSP’s existing international audience.
4. Discussion An internet-wide deployment of a service that intends to store data raises many ethical, organizational, policy, and technology issues to which we hope to open discussion and receive feedback. Foremost among the technological issues are the privacy and security of the data; we elaborate on only these issues due to the space restriction of this discussion paper, but welcome feedback on all aspects of the project. A system that accepts but does not release data to the internet and that provides client-side reporting is a constrained environment in which some issues are easier to address. For example, we can use prearranged secure links (such as through IPSec) to registered users, have firewall access restrictions to all but the registered sites, move all submitted data from an externally-visible system to an internal database behind a firewall with high frequency, and only collect basic source-anonymized data. The challenge is to provide suppliers of data with sufficient value in return for their efforts and contributions to the research data. Also, some solutions impinge on the convenient for nomadic internet users and may require a larger effort to begin using the system that may, in turn, discourage initial adoption. If services are offered to help clinicians track the progress and assessments of their patients then we require that stored data be accessible from the internet and some of the protection mechanisms mentioned above are no longer applicable. The technical consequence of this is that the web server must be able and permitted to retrieve information from the database. The data security requires that only authorized users of the data gain access even though th
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the web server itself may be used by a larger audience. The data privacy requires that the details released through the web server not identify an individual, either directly or indirectly by a release of coincidental information across multiple queries. One can envision using database views to help manage the access, but user maintenance and the load imposed on the database may impose limitations with that solution. An alternative is to have the web applications implement or build upon an existing security component. Then the web server and other applications that it executes outside of the WSP site become exposure points for the data. The security then relies on the proficiency and diligence of the web application creator in enforcing the security and in the web server not allowing other web applications on the same web server to access the database. Although we perceive an opportunity for increasing the impact, value, and exposure of the WSP by providing a richer set of online services, we seek to solicit feedback from the broader health informatics community. We expect that the value is there as it parallels the value that has been achieved with health portals. However, unlike health portals, part of the value is derived from information of a single individual that is communicated to the site. Issues of particular interest for which we wish to engage discussion include - whether the stratification of public and private services on the internet rather than intranet-based solutions has a value that outweighs the risk of data exposure and the efforts needed to secure and anonymize the data, - what best practices (legal, medical, and technical) exist to help provide health-assisting web applications beyond portals, - whether the data collected through public or private (authenticated) internet services can have research value for validating trends that are identified through more controlled data gathering activities; and - how current and developing research results can be provided in a private environment to disseminate results as early as possible without compromising their availability for peerrefereed publications.
4. Acknowledgments The authors thank the Canadian Institutes for Health Research (CIHR) and Kanayo Software Incorporated for their financial contribution to this project.
References 1 2 3 4 5
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The Wheelchair Skills Program (Version 3.0) Manual can be downloaded from: www.wheelchairskillsprogram.ca. Kirby RL, Dupuis DJ, MacPhee AH, Coolen AL, Smith C, Best KL, Newton AM, Mountain AD, MacLeod DA, Bonaparte JP. The Wheelchair Skills Test (version 2.4): measurement properties. Arch Phys Med Rehabil 2004;85:794-804. MacPhee AH, Kirby RL, Coolen AL, Smith C, MacLeod DA, Dupuis DJ. Wheelchair skills training program: a randomized clinical trial on wheelchair users undergoing initial rehabilitation. Arch Phys Med Rehabil 2004;85:41-50. Best KL, Kirby RL, Smith C, MacLeod DA. Wheelchair skills training for community-based manual wheelchair users: a randomized controlled trial. Arch Phys Med Rehabil 2005;86:2316-23. Coolen AL., Kirby RL, Landry J, MacPhee AH, Dupuis D, Smith C, Best, KL, MacKenzie DE, MacLeod DA. Wheelchair skills training program for clinicians: a randomized controlled trial with occupational therapy students. Arch Phys Med Rehabil 2004;85:1160-7.
Kirby RL, Mifflen NJ, Thibault DL, Smith C, Best KL, Thompson KJ, MacLeod DA. The wheelchair-handling skills of caregivers and the effect of training. Arch Phys Med Rehabil 2004 85:2011-9. th
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