valores socioculturales
3.6.1. Desarrollo desde una perspectiva cultural
Identifying challenges and risks is one of the purposes of conducting an environmental and technical scanning exercise. The findings will be useful for consideration in project planning and management of the Canadian MS Monitoring System including risk management and communication strategies. The following perceived challenges and barriers were identified during engagement with the members of the Canadian Network of Multiple Sclerosis Clinics:
• Concern that the project is solely about CCSVI (that is, it may not be a long-term initiative if/once media attention on CCSVI quiets);
• Concern that the project would not provide valued incidence and prevalence data (that is currently lacking);
• Concern that the project would not plan for linkages upfront (for example, with the Canadian Chronic Disease Surveillance Systems and other MS-related initiatives); integration and harmonization with other MS-related initiatives was noted as important;
• Risk of duplication of efforts (for example, with other MS-related initiatives such as the Canadian Chronic Disease Surveillance Systems);
• Risk that general use of health services would not be captured (for example, outpatient visits, hospitalizations, ER visits, home care use, long-term care use)—important issues in treatment; and
• Risk of bias in the data captured by the Canadian MS Monitoring System due to a number of contributing factors:
– The nature of MS (that is, range of severity) and treatment. Patients with the mildest disease and those who have chosen not to pursue disease-specific treatment may not be actively followed and will be missed.
– The scope of the Canadian MS Monitoring System being focused on the Canadian Network of Multiple Sclerosis Clinics (that is, captures an estimated 60% to 80% of patients with MS). This may be further biased due to the proposed voluntary nature of the Canadian MS Monitoring System.
– As with many other diseases, despite public health care, socio-economic status is likely to have some influence on the data that is captured.
– Patients in the latest stages of disease who end up in long-term care tend to be lost to follow-up.
For Participation
• Funding and resource limitations—the most commonly mentioned challenge for participation;
• Data ownership/access issues—the nature of scientific and medical research (publication of research, competition for funding, etc.) may prevent some clinics from participating;
• Questions about consent; and
• Infrastructure limitations (for example, limited computer access).
Summary
MS is a chronic, often disabling disease that has significant impact on those people living with MS, their family and caregivers. The severity of MS can vary from benign through to severely disabling and even deadly.
There are still many unknowns about MS—the cause, the cure, the unpredictability of symptoms. The drive to have a better understanding of MS is evident by the active research environment. Around the world, research is being conducted to help shed light on pathways and mechanisms of MS with research into genetics and immunology. There is also research aimed at improving the treatment of MS symptoms and halting the progression of the disease,
including research investigating CCSVI, stem cell research and pharmaceuticals.
Given the geographical differences in the prevalence rates of MS and the fact that Canada has one of the highest rates of MS in the world, having a better understanding of MS in Canada is important. Chronic disease surveillance is an increasingly important component in Canada’s health care and information system. Having a national system will also facilitate international comparisons to help inform the global view of MS.
To address gaps in information and to better understand this disease, CIHI was asked to develop a national system to measure and monitor the evolution of all forms of treatment of MS in Canada. The goal of the system is to increase our understanding of MS and ultimately improve patient care and quality of life by measuring disease patterns across Canada, identifying variation in use of treatment and monitoring long-term patient outcomes.
The preliminary findings from the technical scan provided insight into the current Canadian landscape. The majority of members of the Canadian Network of MS Clinics maintain an MS clinic data system that is specific to the MS clinic and separate from the electronic health record system within the hospital. The types of software used for the MS clinic data systems vary across the network and include MS Office Excel, SPSS, MS Access and iMed. The use of data validation and edit checks was limited or lacking.
Across the network, there is a notable difference in information collected at the referral stage, partly due to whether or not a clinic requires a confirmed diagnosis of MS at the time of referral.
Standard data collection forms are not typically employed within the clinics at the referral stage.
There is more alignment across the clinics in terms of the types of data collected at later stages of patient care (that is, first visit and follow-up visits). However, data collection is not standard across the clinics.
Observations and experiences from existing MS data collection systems—within Canada and internationally—are useful to consider when developing a national monitoring system. Taking an approach that avoids duplication of effort and minimizes burden will be key for the successful development and implementation of a national system. Maximizing the potential for linkage with other data sources is also important. A review of current CIHI data holdings has shown that there is good potential for linkage to other data sources including ambulatory care, home care and rehabilitation.
Participation is critical to the success of a national MS monitoring system. Planning,
collaboration and effective communication will be important next steps to creating a complete national picture of MS in Canada.
The Canadian MS Monitoring System can be an important component in the effort to
understand MS and ultimately improve the outcomes for people living with MS, their families and caregivers.