Dataset Canadian Multiple Sclerosis Monitoring System (CMSMS)

Name:
Canadian Multiple Sclerosis Monitoring System (CMSMS) 
Data Provider (source):

Canadian Institute for Health Information

 
Description:

The Canadian Multiple Sclerosis Monitoring System (CMSMS) closed in April 2016. CIHI ceased operating the CMSMS due to limited participation provide meaningful data at the national level. The CMSMS Minimum Data Set (MDS) was established in collaboration with MS stakeholders to be used as a national standard for MS data collection. The MDS will continue to be available to individuals or organizations interested in collecting standardized MS data.

The CMSMS contains data on approximately 7% of persons living with MS in Canada.* Since its launch in 2012, the CMSMS had received data from 3 MS clinics in Alberta, Saskatchewan and Manitoba. 

* Based on an estimated 93,500 Canadians living with MS, according to Statistics Canada’s Canadian Community Health Survey (2010–2011).

The CMSMS collected information at initial patient enrolment and at subsequent follow-up visits between health care providers and patients.

Find out more information on the CMSMS (PDF).

 
Purpose:
Tracking treatment for multiple sclerosis in Canada 
Type of Data (select all that apply):
Health Care and Health Services 
Data Collection Method (select all that apply):
Individual Level Data 
Scope:
3 MS clinics in Alberta, Manitoba, Saskatchewan 
Identifiers used for linkage:
Personal Health Number, Date of birth 
Access requiredments and conditions for Researchers and Projects:

Data Access Conditions:

  • In addition to the CIHI data access condition below, requests for Quebec data are subject to review and authorization from the Quebec Privacy Commission (Commission d’accès à l’information du Québec) and the Québec Ministry of Health and Social Services (MSSS).
  • CIHI discloses health information and analyses on Canada’s health system and the health of Canadians in a manner consistent with its mandate and core functions. These disclosures typically fall into one of four categories:
    • Disclosures to parties with responsibility for the planning and management of the health care system to enable them to fulfill those functions;
    • Disclosures to parties with a decision-making role regarding health care system policy to facilitate their work;
    • Disclosures to parties with responsibility for population health research and/or analysis; and
    • Disclosures to third-party data requesters to facilitate health or health services research and/or analysis.
  • Prior to disclosure, CIHI reviews the requests to ensure that the disclosures are consistent with the above and meet the requirements of applicable legislation.
  • CIHI data disclosures are made at the highest degree of anonymity possible while still meeting the research and/or analytical purposes. This means that, whenever possible, data are aggregated.
  • Where aggregate data are not sufficiently detailed for the research and/or analytical purposes, data that have been de-identified using various de-identification processes may be disclosed to the recipient on a case-by-case basis and where the recipient has entered into a data protection agreement or other legally binding instrument with CIHI.
  • Only those data elements necessary to meet the identified research or analytical purposes may be disclosed.
  • For more information, please reference CIHI’s Privacy Policy:

Requirements for record-level data access:

  • Prior to disclosure, the recipient must sign a data protection agreement or other legally binding instrument that, at a minimum, contains the following requirements:
    • Prohibits re-identifying or contacting the individuals;
    • Prohibits linking the de-identified data unless expressly authorized in writing by CIHI;
    • Limits the purposes for which the de-identified data may be used;
    • Requires that the de-identified data be safeguarded;
    • Limits publication or disclosure to data that do not allow identification of any individual;
    • Requires the destruction of data, as specified;
    • Permits CIHI to conduct on-site privacy audits pursuant to its privacy audit program; and
    • Requires the recipient to comply with any other provision that CIHI deems necessary to further safeguard the data.
  • Prior to the disclosure of de-identified data for research purposes, the requester will provide CIHI with evidence of Research Ethics Board approval.
  • CIHI reserves the right to impose any other requirement(s) as needed on a case-by-case basis in order to maintain the confidentiality of de-identified data.
  • Prior to disclosure, program areas will evaluate the de-identified data to assess and subsequently minimize privacy risks of re-identification and residual disclosure, and to implement the necessary mitigating measures to manage residual risks.
  • CIHI will not disclose de-identified data if it is reasonably foreseeable in the circumstances that it could be utilized, either alone or with other information, to identify an individual and that, where it is reasonably foreseeable that it could be used to identify an individual, the information will be treated as personal health information.

Access process:  All data access requests can be initiated at the following CIHI webpage: https://www.cihi.ca/en/access-data-and-reports/make-a-data-request, and complete an Access Data Inquiry Form.

 
Contact:
Phone: 1-613-241-5543 Email: help@cihi.ca 
Inclusion:

n/a

 
Exclusion:

n/a

 
Data is available from:
September 2012 to database closure in April 2016. CMSMS data received prior to database closure can be accessed via CIHI’s custom data access process. 
More Information (including references):

The CMSMS MDS, which was established to be used as a standard for MS data collection, includes the following categories:

  • Submission Control Data
  • Client Demographics
  • Client Service Encounter
  • Client Profile
  • Diagnosis
  • Clinical Characteristics
  • Medications
  • Treatment
  • Outcomes

The CMSMS collected information at initial patient enrolment and at subsequent follow-up visits between health care providers and patients.

 
log:
[2019-02-11 14:28] Sarah Kesselring: Edited by Sarah Kesselring (skesselring)