Special Data Projects
ICES also participates in health informatics projects for which data records are collected directly at the bedside. These include:
- Health Outcomes for Better Information and Care (HOBIC)
- the Dialysis Measurement, Analysis and Reporting (DMAR) system
- the Ontario Implantable Cardioverter Defibrillator (ICD) database
For all such initiatives, patient records are gathered on the front lines of health care (via the ICES computing environment) and then used by service providers for clinical and quality improvements. As always with ICES, ICES removes direct personal identifiers like names and health card numbers and assigns the ICES confidential code, the IKN, before it is added to ICES data.
This constant expansion in the breadth of data holdings lends an added dimension of relevancy to ICES research. Relevancy, in turn, helps to ensure that studies and atlases continue to have a meaningful impact on policy and practice in the Ontario health care system.
Offline Chart Abstraction (OCA)
Some ICES studies require more detailed information, such as:
- laboratory and diagnostic test results,
- patient clinical health status,
- well-being and social health determinants, or
- data on patients with particular health conditions.
This detailed clinical information is often found in documents stored at health care institutions or in physicians’ offices across Ontario.
Such data is gathered on-site by trained specialists using laptops equipped with an ICES-developed application called Offline Chart Abstraction (OCA). Launched in 2010, OCA uses encryption and other safeguards to ensure that all data collected – whether stored on hard drives or transmitted electronically – is unreadable to anyone but authorized project personnel. ICES professionals are now further developing the OCA application to enhance its efficiency, usability, data integrity and security.
ICES is currently piloting a small number of research projects called “patient contact studies” that aim to involve individual Ontarians in studies of ways to improve the health care system. Individuals who potentially meet the criteria for these studies based on prior health services received are contacted, potentially through their primary care provider, to confirm their eligibility for the study and to gauge their willingness to participate, after which fully informed consent is obtained. All ICES patient contact studies are reviewed and approved by the ICES Executive Committee and our Privacy & Legal Office, and are also overseen by an Ontario Research Ethics Board.