From left: Debra Morgan, Jacqueline Quail and Julie Kosteniuk
Collaborators from the Health Quality Council (HQC) and the Rural Dementia Action Research (RaDAR) team are working together to better understand dementia care and the number of people who are living with dementia in Saskatchewan.
The first phase of the RaDAR-HQC Gap Analysis of Dementia Care project – which has just wrapped up – included an analysis of administrative health data, as well as a review of best practices in dementia care and an environmental scan of dementia-related services and resources. The second phase will begin in January.
Debra Morgan, who leads the RaDAR team, said the partnership with HQC has been “fantastic.”
“I think this project draws on our joint expertise, knowledge and skills to do the kind of analysis we couldn’t do alone,” said Morgan, a professor in the Canadian Centre for Health and Safety in Agriculture (CCHSA) at the University of Saskatchewan (U of S) College of Medicine.
As part of the project, HQC accessed, linked and analyzed 10 administrative health care databases. Jacqueline Quail, a senior researcher at HQC, was responsible for the hands-on database work. Through meetings with Quail and Gary Teare, the executive director of measurement and analysis services at HQC, the RaDAR team was able to use the data to identify people with dementia and determine the incidence and prevalence of dementia in Saskatchewan.
The researchers acknowledge that the actual number of individuals living with dementia is likely higher than the number identified in their project, due to the under-diagnosis of dementia and the limitations inherent in using administrative data. Administrative data is the data that is collected by the provincial government for billing and census purposes.
Quail said Saskatchewan’s administrative databases are among the best in the world.
“HQC has the privilege of being able to access many of the databases quickly and free of charge in order to use the data to monitor and improve the health of Saskatchewan residents. HQC accesses the data under the terms of a data-sharing agreement with the Ministry of Health,” she said.
The government’s vital statistics database contains information on all the births and deaths in Saskatchewan, said Quail. The Person Health Registry database contains basic demographics on all people covered by the provincial health insurance plan – more than 95 per cent of residents in the province – such as age, gender and geographic area of residence.
“As well, every time a physician treats you, they submit a claim to the Saskatchewan government requesting reimbursement for the treatment they provided to you. Physicians who are paid by salaries, rather than receiving reimbursement for treatments they provide, are still required to submit a record of the treatment they provided. All these data are stored in a database,” said Quail.
The government also has databases on topics such as hospitalizations, emergency department visits, home care visits, prescription drugs, long-term care residents, long-term care facilities and health insurance, she said.
“The type of research we do here at HQC with the administrative data is called secondary use of data. That means that the data have originally been collected for a reason other than the research projects upon which we are working,” said Quail.
“This means that the data may have some limitations in their use to answer a specific question, since it was not collected specifically for that reason. Overall, though, high-quality administrative data, when understood well and used appropriately, are incredibly powerful tools to understand the health of a population and to resource health care services appropriately, as well as to answer research questions that may lead to a better understanding of, and thus improvement in the care of, certain diseases.”
Quail emphasized that protecting the privacy of individuals and patients is of the utmost importance to HQC.
“All data used at HQC are de-identified. That is, names, addresses, exact date of birth and similar identifiers have been removed from the data and only encoded numbers are used to link health data for individuals across the various data sets,” she said.
“HQC has strict rules governing the use of data and has implemented fail-safe policies to ensure that privacy and confidentiality are safeguarded at all times. My health information, along with the health information of all HQC employees, is in those databases, too, and so we protect the data as if it were our own – because it is.”
Julie Kosteniuk, professional research associate at the CCHSA, said getting access to the type of data used in the RaDAR-HQC Gap Analysis of Dementia Care project has been “historically very difficult” for researchers, so collaborating with HQC was valuable to the RaDAR team. HQC researchers and research analysts routinely work with the administrative databases that were accessed for the dementia project.
“Working with HQC ensured access was streamlined. HQC has expertise to analyze large administrative databases that some researchers do not have,” Kosteniuk said.
Kosteniuk said dementia is an important area of study.
“We have an aging population. Age is the main risk factor associated with dementia, and it follows that we will have more individuals with dementia in the future. It is important to have epidemiological data that is as current as possible, and that combines both community-based and long-term data. This information can inform policies that affect individuals with dementia and their families throughout Saskatchewan,” she said.
“The RaDAR-HQC Gap Analysis of Dementia Care project provides up-to-date information on the epidemiology of dementia across Saskatchewan, by health region – including physician, hospital, prescription drug and long-term care data – plus an overall scan of local services for individuals with dementia in the province.”
The RaDAR team is comprised of interdisciplinary researchers from several Canadian provinces and the United Kingdom and is based at the U of S. RaDAR’s flagship project is the Rural and Remote Memory Clinic, which began as a research demonstration project in 2004. The clinical service component is now funded by the provincial Ministry of Health. The clinic focuses on diagnosing and managing atypical and complex cases of suspected dementia in patients living in rural and remote communities outside of Saskatoon and Regina.
According to the federal government, an estimated 747,000 Canadians were living with cognitive impairment, including dementia, in 2011. That number is expected to increase to 1.4 million Canadians by 2031, with a cost to the Canadian economy of about $300 billion per year. In September, federal Health Minister Rona Ambrose announced the launch of the Canadian Consortium on Neurodegeneration in Aging (CCNA), a national initiative to address the growing onset of dementia and related illnesses in Canada. One of the 20 CCNA research teams will be co-led by Morgan and will include members of the RaDAR team.
The first phase of the RaDAR team’s work with HQC has concluded. Phase 2 will involve examining patterns in health service use before and after the first identification of dementia in a patient in an administrative database.
The HQC-RaDAR collaboration has resulted in two papers that were submitted to peer-reviewed journals. A separate project report, entitled “A Multi-Method Investigation of Dementia and Related Services in Saskatchewan,” has been drafted and contains 10 recommendations around policy, research, and knowledge translation and exchange. That final report is expected to be released this fall.
As well, a research poster featuring the RaDAR-HQC Gap Analysis of Dementia Care project will be displayed during the 7th International Safety & Health in Agricultural & Rural Populations (SHARP) conference, which will be held in Saskatoon from Oct. 19-22, 2014. A 45-minute oral presentation will also be made during the 7th Annual Summit of the Knowledge Network in Rural and Remote Dementia Care on Oct. 22, 2014, in Saskatoon.
HQC is an independent agency that works closely with health regions, health providers and government to make health care better and safer for Saskatchewan patients. The RaDAR team has been working since 2003 to improve rural and remote dementia care.
For more information on how HQC is measuring and reporting on the quality of health care in Saskatchewan, visit http://hqc.sk.ca/improve-health-care-quality/measure/.
For more information about the RaDAR team, visit http://www.cchsa-ccssma.usask.ca/ruraldementiacare/radar.html.
For more information about the SHARP conference, visit http://cchsa-ccssma.usask.ca/sharp2014/.
For more information about the 7th Summit, visit http://www.cchsa-ccssma.usask.ca/ruraldementiacare/summit2014.html.