Dr. Nadia Alam and Dr. Irfan Dhalla discuss OMA study findings on patient preferences
Patient-centred care is hardly a new concept. Yet doctors don’t always have a firm grasp on what patients want. Nor does the health care system. For the sake of the best possible outcomes, we need insight into the information, choices, style of care and co-ordination that meet patient requirements.
That’s what the OMA has attempted to do with a new white paper called Patients’ Views of the Canadian Health Care System . It was produced by the North American Observatory (NAO) on Health Systems and Policies at the OMA’s request. The NAO is a research centre at the University of Toronto’s Institute for Health Policy, Management and Evaluation.
To learn more about the findings and implications, the OMR talked to two physicians who’ve spent a lot of time thinking about system quality: Dr. Nadia Alam and Dr. Irfan Dhalla.
Dr. Alam is a family physician in Georgetown, Past President of the Ontario Medical Association, and a lecturer at the University of Toronto’s Department of Family and Community Medicine. She has written and spoken widely about policy issues, including primary care, mental health, health system design and transformation, COVID-19, indigenous health, equity, burnout, pharmacare and organizational change.
Dr. Dhalla is Vice President, Physician Quality, and Director, Care Experience Institute at Unity Health Toronto (comprising St. Joseph’s Health Centre, St. Michael’s Hospital and Providence Healthcare). From 2013-2019, he was a Vice President at Health Quality Ontario, where he and his colleagues transformed how the agency supported the province’s health care system.
Dr. Alam: People want to feel empowered. Illness strips away your sense of control, and has so much complexity and uncertainty. Patients want to grab back some of the aspects of their wellness and illness that are under their control, so they don’t feel so helpless.
Dr. Dhalla: It tells us what we know – that the people we’re taking care of want us to actually care about them.
Dr. Alam: People also don’t know how to get from service A to service B. They rely on us as health care providers to get them there, and navigate the facts and uncertainty.
Dr. Alam: How closely a lot of the answers in the OMA paper tracked with my anecdotal experience. Patients are telling us what they prefer.
Dr. Alam: We’re sensitive to the fact that there’s a perceived hierarchy between patients and physicians. So patients may be intimidated to tell us what they think, and feel that doctors may not respect their fears and concerns. But patients are feeling more comfortable telling the whole truth about their experience.
Dr. Dhalla: The report reminds us that we need to listen to our patients. At the bedside, in the clinic, and when we’re designing how our systems work. Physicians are very good at listening to patients in the office or at the bedside, but we haven’t been trained in how to listen to our patients collectively. What do our patients think about how we organize our clinics, for example?
Dr. Alam: There is systemic racism baked into the medical system. COVID-19 has really brought that to the forefront. As a doctor, part of me is struggling because I can witness and acknowledge my patients’ experiences, but don’t always know how to help.
Dr. Dhalla: When I read a report like this I find myself thinking what would it be like to be Black or poor and needing health care. The report also reminds us that representation matters. How welcome do Indigenous patients feel if they never see an Indigenous physician or nurse? All of us can feel vulnerable when we’re ill, but imagine how much more vulnerable you might feel if you’re Black and you don’t see a single Black doctor.
Dr. Alam: What’s coming through loud and clear is the desire for integration. Ontario Health Teams are premised on other integrated care delivery systems, some of which have proven to be very successful in improving the quadruple aims – provider experience, patient experience, population health outcomes, and system efficiency. Integrated care delivery is a step towards putting funding on what’s valued the most in a health care system.
Dr. Alam: Not everything you do in health care leads to good outcomes. And providing low-value care is tied to burnout, so it’s worth building systems that incentivize high-value care. We need to build systems that measure what we value, not what’s convenient or easily available. We need to look at broader metrics that involve patient experiences and desires.
Dr. Dhalla: One really positive development in last few years is the institution of the Minister’s Patient and Family Advisory Council. It has symbolic value, and sends a clear and powerful signal that we’ll develop the health care system in partnership with patients and families. We need to truly partner with patients and families when we make changes to our health care system.
Dr. Dhalla: It’s not explicit in the report, but implied is that more resources are needed in the publicly funded health care system. Patients want a more robust system, with strong support for pharmacare and publicly funded home care, to give two examples.
Dr. Alam: Outcome metrics are very difficult to measure, because they have so many inputs and outputs that are beyond the control of the health care system. Patients’ experiences and expectations of the health care system are not often counted when decision-makers are looking at what to fund, and what to structure in the system.
Dr. Dhalla: The way responsiveness has traditionally been measured is access. But other aspects are equally important but not consistently measured. Like cultural sensitivity, or the concept of having time to have questions answered and get educated.
Dr. Alam: The world is responding to a totally new disease entity. We still don’t have solid information on what the illness involves, the consequences, and the best ways of treating it. What has been tough for patients is conflicting information, whether physicians arguing with physicians, or public health agencies in different countries saying different things. It has all been difficult to navigate. I’m not trying to stop patients from seeking information. I encourage them. But use me to filter it and be the sense-maker, to help them figure out whether the information is trustworthy and reliable.
Dr. Dhalla: There’s so much accessible information out there. Many people will know more about their particular illness than their doctor. But there are also people who don’t want to sort through all that information. We’re the trusted source, to contextualize the information and help patients make the decisions that are right for them. That’s an awesome responsibility.
Dr. Dhalla: I think that’s a little unfair to be honest. There are a lot of organizations that partner with patients and capture their experiences in increasingly sophisticated ways.
Dr. Alam: When I’ve seen groups seek out patient advocates, they often take their experiences as representative of all patient experiences. That’s not really true. Patient advocates, in my experience, are very clear that they represent their own lived experiences. That said, their lived experience will have themes that will be important. However, there isn’t much easily accessible or commonly used data on what patients want. This is one of the first papers to look at patient expectations at an aggregate level and stratify these desires and experiences based on life stage and health status.
Dr. Alam: I think doctors do a really good job at seeing the interplay between physiology and illness, and managing complex illness interactions. We find it more challenging to navigate the social consequences of illness. Like the patient with a heart attack who can’t afford all the medications that will help prevent the next one. Or the 80-year-old going through chemotherapy, and the toll not in terms of side-effects but on their caregivers. That human element is what makes the system so amazing and challenging at the same time.
Dr. Dhalla: I go back to listening well, which is an act of humility. You listen because you’re seeking to understand. The truth is, most of the time we don’t know the answer – if the question is what does the patient want. This isn’t new. It was Osler who said, listen to your patient, he is telling you the diagnosis. We also have to go up one level. Listen to our patients collectively, they’re telling us how to design the system or the hospital.
Dr. Alam: We’ve gotten into a whole movement of quality improvement, and process mapping, and trying to eliminate variations. While quality improvement is important and standardization will improve some aspects of quality, it’s important to remember that autonomy is better at dealing with input diversity. After all, people don’t come in cookie cutter shapes and sizes.
Dr. Dhalla: Patients want to feel that their doctor understands their concerns, and their experience of their illness. Once you have that trust, everything is easier. For the patient and the physician.
Dr. Alam: They want us to recognize that they’re invested and equal partners in the care that they access. That’s the concept of personalized care. When you make recommendations for a patient, they need to know that you’ve taken the time to find out about them as a person. They’re not just a checklist or a medical problem to solve.