Kevin Leonard is a research scientists at UHN‘s Centre for e-Health Innovation and belongs to U of T’s Department of Health Policy Management and Evaluation. His primary areas of research: development of a national patient advocacy program, along with issues related to developing and implementing patient-focused Information Technology; and creating and implementing metrics for performance measurement of healthcare’s information technology.
“I look at people-centred healthcare more from an academic/healthcare observer/researcher perspective, and the rest sort of trickles out.
“In a world that is doctor-focused, it starts when the doctors get up in the morning and go into their office and start treating the folks in their waiting rooms. And the results get stored in their office systems, and patients maybe go away and do what they’re told, and the doctor goes home, and there’s no more care till the next day. Other times, the healthcare’s in the street or in the ER.
“In a patient-centred world, there is no system unless you have patients. Without trauma, without illness, there’s no need of healthcare. So in this sense the patient is the centre because there’s no need without the patient until they present themselves to a nurse, doctor, nurse practitioner, ambulance, whatever. Then I need to know a lot more about this patient, because it will be the patient’s identity and details that drive the system’s response.
“The doctor comes and goes, the pharmacy comes and goes, the hospital comes and goes, but the patient remains. So all the patient information has to be brought together in some synthesis that generates better data processing, and makes it available. The care providers have to be able to know everything about the patient who’s in the room – what condition could they have, who’s their pharmacy, what drugs are they on, what allergies do they have related to medications, what [conditions] have they had previously.
“Further, we NEED to be able to move information that’s in the record around. Let’s assume that there’s no such thing as complex chronic disease syndrome – the patient has one illness at the most. It’s very straightforward. So they have a GP and a specialist, and that’s it to engage the patient. Plus a 3rd – a caregiver. It can be a spouse or parent or child: they’re there to make sure the care’s appropriate, that the information that defines what’s important is available; and paper-based just doesn’t cut it. Electronic or digital can have embedded in it treatment schedules, treatment options, different drugs you could take two times rather than the ‘horse pill’ once – all of that is possible. When you talk about referrals, not only do I need to get a schedule, the specialist better ask intelligent questions based on having read all the electronic information first!
“I want to make sure that the family who live in Saskatchewan, the senior who lives in Ottawa and the fisherman who lives in Newfoundland have the same outcome for their health issues, and it doesn’t rely on who they know. We need a system that creates, and supports everybody.”
And the issue of healthcare performance measurement?
“Once you measure, then you know where the distribution is, you know what the worst is. You can say you’re measuring to find out the best, and that’s a good message for sure; but the people who are very insecure, it doesn’t matter what you tell them. There’s so many people who are below average in healthcare. The last thing they want to do is create some kind of system that measures, because in their life ‘Every time I get measured I get screwed.’ Well, that’s because you’re not very good at it! People are fearful, they don’t have the confidence. They don’t even know what it is they should know.
“The best thing Loyola College taught me was how to say, and when to say, ‘I don’t know’. If you have no confidence, if you have no competence, then you’re not sure if you’re supposed to know this or that or not. I worked at the Bank of Canada. I can hold my own with the best in my field. But where I didn’t know, I was confident to say: ‘If I don’t know about this then it’s obscure or I never came across it, so it’s legit not to know it!’ There’s a tremendous power, a freeing up of your mind - and your productivity – when you admit what you simply don’t know.
“We have to talk about this issue of measuring healthcare performance, because it’s so near and dear. There’s apathy involved, there’s pushback from people in healthcare fields, there’s ignorance from people inside. There’s not much internal momentum to reach out and engage the most important stakeholder, who is the patient. And yet it’s so important, because l think people should be upset about the fiscal sustainability of our system otherwise. We’re going to lose something we all treasure! If we just let it slip away, that’s sad.”