This is part of our 'Impact' series, where we unpack the context and opportunity for our work, and what it means to patients, family caregivers and the healthcare community across Canada.
What's important to you in your relationship with your family doctor? We partnered with the Association of Family Health Teams of Ontario (AFHTO) to help them answer that question. We started with a survey, "Value in the Patient-Doctor Relationship," which we helped them develop and share in March 2015. Many of you participated – thank you – and may be curious about the results. We are, too!
We sat down with Carol Mulder, AFHTO's Provincial Lead of Quality Improvement & Decision Support Program, to unpack the survey's significance and how its results can lead to an improved patient experience.
Can you tell us about the project and how it came to be?
Carol: The survey that we developed with help from Patients Canada, ‘Value in the Patient-Doctor Relationship’, is part of our larger quality improvement project, Data to Decisions (D2D). Centred on team-based performance measurement, we’re working with our member Family Health Teams (FHTs) and Nurse Practitioner-Led Clinics (NPLCs) to develop a report they can use to measure what matters in their efforts to improve care.
This project really reflects our general approach to performance measurement in primary care. Among the principles important to a good primary care system is that it’s comprehensive, patient-centred and based on a continuing relationship between patients and their providers. So, that’s where we started.
We needed to measure in a way that aligns with those principles and, ultimately, in a way that reflects that very important patient-doctor relationship. We had to find out what’s important to patients within the context of their relationship to their provider, which is the basis for our partnering with Patients Canada on this project.
I’ll first tell you a bit about the process. As well as it being a personal philosophy of mine, our partnership flowed from our 2014 conference, In Partnership with Patients: True Integration of Care, where the theme was patient involvement. Patients Canada was very involved in that conference: they guided the plenaries, they helped set the tone for constructive dialogue and Sholom Glouberman, Founder of Patients Canada, was our keynote speaker.
Coming out of that there was a lot of discussion around what it actually means to have patient participation – you can’t involve patients meaningfully by asking them, "is this what you like?" just before you press the ‘send’ button.
It was Sholom who recommended working together to identify what measures of primary care performance matter to patients. That’s how we came to the idea of creating a survey for patients. After our first meeting with Patients Canada’s Key Performance Targets (KPTs) working group we noticed a shift in how we thought about the survey. We saw the value in writing and designing the survey questions together, and in integrating the KPTs as they are patient-driven measures of what constitutes patient and family-centred care.
How do you think the project benefited from involving the patient perspective?
Carol: We had an idea of what we wanted, but when working really closely with something, you are sometimes unaware of how others see it. Patients Canada’s Patient Advisors and KPT working group helped us understand the crux of what we were looking for. There were a few iterations, as we needed to make the language more accessible to diverse patient populations. Ultimately they helped us identify which measures of primary care performance should be included in the survey. They also provided helpful direction for wording the questions.
Patients Canada was instrumental in the survey’s successful response rate – three quarters of responses came from Patients Canada’s channels! There’s credibility around having Patients Canada facilitate the connection because it wasn’t a matter of simply putting the Patients Canada name on the survey – there was genuine engagement as opposed to a traditional top-down approach, which can be token. The large number of responses shows that it’s a fairly workable survey, and that it’s something that Patients Canada felt good about distributing to its membership.
So what did you learn from surveying patients and family caregivers?
Carol: The results show that a vast majority of patients want a relationship with their primary care doctor. This makes the point that it’s worthwhile asking patients what they want in a partnership because they do want a partnership. This establishes the rationale, the need and why it’s useful to check with patients about what’s important.
Of all the measures, the most important to the patient-doctor partnership are
- The extent to which patients are involved in decision-making;
- The amount of time spent together;
- And how seriously the doctor took the patients feelings and concerns and was willing to work with them
I’ll add that none of the measures in the survey were considered not important by participants. They range in terms of importance but none are unimportant. This is a useful observation because there’s sometimes this fear that there’s what the patient wants on the one hand and what the doctor wants on the other, so they’re competing. But there’s back and forth, like any relationship.
Why should this matter to patients?
Carol: It makes it possible to bake patient expectations right into the “hard data” used to measure performance in primary care. We probably will always need and want patient stories to put these measures in context. However, with the survey results, we no longer need to choose between “hard data” and “patient stories” to decide how well we are doing in primary care. We're now able to calculate an overall roll-up measure of quality which gives weights to the particular aspects of care that matter most to patients.
This is all really new work. In fact, the actual math of calculating this roll-up measure (which is a composite of many individual indicators) is still a work in progress. However, thanks to the survey, we are now nicely started on a journey towards measuring primary care in a way that helps us understand what's important to both providers and patients.
How will you move forward with this project and primary care measurement generally?
Carol: We’re very much in the early days of this, conceptually, but this was an important and good first step. In the future we’re going to seek insight from patients on the equally important follow-up question, "in what way is this important to you?”
In addition, we’ll continue with the math work to calibrate our measures to make sure our continued focus is on what’s important to patients. We’ll be looking to other patient groups to see if expectations are different between groups or areas of the province. We also plan to expand the scope of information about patient expectations by looking at the relationship between patients and other providers, not just doctors. Measurement in primary care is one of AFHTO’s key strategic priorities. We are so grateful to Patients Canada for their help in keeping the focus on patients and their families as we move forward in this work.