How health partnerships are improving Canadians’ care
If you have psoriatic arthritis, you know it can be tough to live with. The autoimmune disorder, often associated with the skin condition psoriasis, can lead to joint inflammation and swollen toes and fingers. The symptoms range from mild discomfort to pain so severe that you can no longer shower, pick up groceries or walk without help.
Psoriatic arthritis is of particular concern to health researchers in Newfoundland and Labrador — the condition is more common in this province than nearly anywhere else in Canada. The unique genetic makeup of Newfoundland’s population has made its residents more vulnerable to psoriasis, explains Dr. Margaret Steele, dean of the Faculty of Medicine at Memorial University. In turn, there is a higher prevalence of psoriatic arthritis. It’s largely a hereditary condition, commonly passed from one generation to the next.
Last October, Memorial University formed a partnership with Janssen Inc. (Janssen) to fund new research into psoriatic arthritis and other complex health disorders that afflict people in the region. This project includes representation from a number of provincial health agencies, along with government ministries focused on industry and innovation.
The Janssen and Newfoundland and Labrador Health Innovation Partnership (JANLHIP) is designed to draw on research findings to improve healthcare and disease-management systems, with the goal of ultimately providing a better quality of life for patients. The project is being led by Dr. Proton Rahman, a rheumatologist, and includes input from university, industry, government, clinical and research professionals. These groups will co-create research questions, and contribute to research outcomes.
“We have chosen psoriatic disease because it has a significant impact on people here,” says Dr. Steele, noting the JANL-HIP group will also work to identify other research priorities. “Patients, government decision-makers, researchers and industry will have an opportunity to address the most relevant questions that are pertinent to our province.”
JANL-HIP will gather health data from a variety of sources, including electronic medical records, health registries and insurance claims. With advances in technology, the quality and the amount of health data is expected to increase, and enable efficiency in the integration of various types of data – data, which is collected anonymously to protect patient privacy. Health experts believe the study of this information can generate important insights into a patient’s experience and how well disease-management plans are working.
Dr. Steele notes that these types of insights wouldn’t be found in a randomized clinical trial, long viewed as the gold standard for evaluation and intervention. While vital to research, she says that clinical trials have some limitations: they have strict inclusion criteria, are restricted in size and duration, and are conducted in a highly controlled environment.
“They tend to test a subset of patients who are often not the ones with comorbidities [living with more than one illness],” Dr. Steele says. “They only compare one or two products, and they are often one against one or one versus a placebo.”
Evaluating health data from real-life settings offers new knowledge into “everyday” patients – not just those enlisted for a controlled study. The data can better predict how they will respond to a particular therapy and enables doctors to tailor treatments as much as possible to the individual. It’s an innovative approach that’s becoming increasingly valued by governments and health regulators around the world.
Janey Shin has seen an increasing interest in this Real World Evidence (RWE), as it is known in health circles. As the director of Real World Evidence at Janssen, she believes the data from real-life settings holds a lot of promise. “Real World Evidence can explore questions such as whether patients actually take all of their medications, and reasons for missing doses. It can help doctors learn more about a patient’s quality of life, and how a particular diseasemanagement strategy (and associated outcomes) is working for people living with multiple health conditions.” Shin says. “The data can ultimately affect policy and help governments decide where to invest their healthcare dollars.”
“Government agencies and regulators around the world are now saying we need to look at the true impact of interventions, to assess value for the investment,” Shin says. “They’re looking to incorporate health data from the ‘real-world’ to inform their decisions.”
JANL-HIP is one of several partnerships underway across Canada that bring together government, clinicians, researchers, and industry groups.
At Memorial University, Dr. Steele sees the JANL-HIP collaboration as a winning formula that gives patients a stronger voice and provides important funding to improve medical care in Newfoundland and Labrador.
“It’s such an opportunity,” she says. “We have a close working relationship with the provincial government here, as well as with regional health authorities, and we get to work with industry and patient groups to ultimately improve peoples’ lives.”