Patients may face long waits for care, and often lack the information and digital tools they need.
A high-performing health system has a strong foundation of primary care, which includes family doctors, general practitioners, and nurse practitioners. Through primary care, patients should be able to find and access specialty care when they need it for things like hip or knee replacement surgery.
Ontarians give mixed reviews on their wait time to see their family doctor or other primary care provider. About 69% said in 2018 that the timing to see their primary care provider when they were sick or had a health problem was “about right.” However, about 17% said their wait was “somewhat long” and about 13% said it was “much too long.”
The percentage of cases completed within target for the most common category of hip and knee replacement surgeries has decreased compared to a decade ago. For example, 83% of the most common hip surgeries were completed within target in 2018/19, dropping slightly from 86% in 2008/09. However, the number of surgeries completed over this time more than quadrupled.
Over the same time frame, there has been substantial improvement in waits for the most common priority category of cancer surgeries. Ontario-wide, the proportion of these cancer surgeries completed within target increased to 85% from 68% between 2008/09 and 2018/19.1 Explore patient wait times for surgeries and procedures: https://www.hqontario.ca/System-Performance/Wait-Times-for-Surgeries-and-Procedures
It’s also often tough for patients and their family and friend caregivers to find the information they need – via digital access or other solutions – to navigate the health system and manage the patient’s health.
The percentage of Ontarians who said they emailed their primary care provider in the previous 12 months when they had a medical question increased to 4.7% in 2018 from 2.5% in 2013. But in a 2016 international survey, the percentage of Ontario adults who said they had emailed a question to their regular health care provider’s practice in the previous two years was very low – at 4% – compared to countries such as France, at 24%, and the U.S., at 12%. The international survey also showed 6% of adults in Ontario had viewed online or downloaded their own health information in the previous two years, compared to 27% in France and 25% in the U.S.
Some patients in Ontario are accessing health care remotely through digital tools. In 2018, Ontarians made nearly 900,000 virtual visits with health care professionals, and more than 33,000 eConsults were conducted.2 Virtual Care in Action. Retrieved August 28, 2019, from OTN.ca website: https://otn.ca/virtual-care-in-action/
Whether they have access to health information and care options may affect patients’ and caregivers’ ability to cope with the challenges they face.
Among Ontarians who were hospitalized, just over half (55.8%) said in 2017/18 that they received enough information about what to do if they had problems after leaving hospital. Among all Ontarians who received home care, just over half (53.9%) said in 2017/18 that they "strongly agree" that they felt involved in the development of their home care plan. Another 28.3% said they "somewhat agree."
For the family and friend caregivers of long-stay home care clients – those who have received home care for more than two months – the rate of distress is on the rise. More than 4 in 10 long-stay home care clients with caregivers (43.5%) had caregivers who experienced distress, anger or depression in relation to their caregiving role, or were unable to continue caregiving, in 2017/18. That was up from 33.8% in 2014/15, and represented more than 26,000 additional distressed caregivers. Ontario’s caregiver distress rate was highest among all the provinces for which comparable data were available, and more than double that of Alberta, a sign that caregivers here may not be receiving the supports they need.
Learn about what quality care looks like for patients and their family and friend caregivers during the transition from hospital to home: https://www.hqontario.ca/evidence-to-improve-care/quality-standards/view-all-quality-standards/transitions-from-hospital-to-home
Learn more about of the quality of cancer care in Ontario, from the Cancer System Quality Index: https://www.csqi.on.ca/
Digital opportunities for care and communication
Read Katherine’s Story
Katherine always believed that no news was good news, especially when medical tests were involved. In 2014, she’d been having chest pains and difficulty swallowing, but after her tests, the phone didn’t ring. “If you don’t hear anything, you assume it’s all good,” she says. But during a regular visit with her doctor the following year, the Thunder Bay retiree found that both tests had identified problems. “A year and a half had gone by and I wasn’t informed.”
The delay meant a year of missed treatment for gastrointestinal reflux disease and for an esophagus disorder that causes difficulties swallowing and weakening of the muscle that moves food into the stomach. It wasn’t the first time that Katherine – who was already managing several chronic health problems – felt left in the dark in a way that affected her care and even how she understood her conditions. “It would make a big difference for me to be able to access test results,” she says.
During that year of waiting, troubled breathing had sent Katherine to the emergency department, where a CT scan revealed an aortic aneurysm. She got those results by phone, with instructions to see a vascular surgeon in Toronto. Before the appointment, she limited her activities, and didn’t even drive. “I was petrified. I thought this thing could just burst inside my chest.”
It wasn’t until after she saw the surgeon, two months later, that she learned the condition wasn’t as dangerous as she’d understood. “It was just a lot of miscommunication,” she says. “I never saw what the original radiologist wrote down.”
Along with the vascular surgeon, Katherine has seen a nephrologist, an endocrinologist, a cardiologist, and a gastroenterologist over the past four years. She sees the specialists once or twice a year and follows up with her family doctor. Some of her medications for one condition can interact with others in ways that can cause problems, and she’s reached out for help in sorting everything out. “I’ve been going to the pharmacist and getting him to sit down and go over everything and make sure everything is in order.”
Katherine retired five years ago, tries to stay active, and is even working part-time at her old job. “I have good days and bad days,” she says of managing the different conditions. But co-ordinating all the information on them has been harder. For example, when she asked her family doctor about a thyroid disorder diagnosed by one specialist, her doctor hadn’t been informed. “She didn’t have any report, so she didn’t know anything about it,” she says.
Katherine takes notes at appointments and does research on her own to figure out what’s going on, but the lack of information that’s specific to her case is disheartening, she says. Without it, “I never feel that I’m getting the optimum care that I require.” Getting to see some blood test results through lab portals has been helpful, but what she really wants is access to all of her own records, including the larger test results like X-rays or CT scans. “I’d have more information about what’s been done and what the results are [and] what’s completely normal, what’s abnormal,” she says. “I don’t think I’d feel as frustrated ... I’d feel more in control of my own health. “
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