A National Registry for Canadian PH Patients (Part 1)

A National Registry for Canadian PH Patients (Part 1)


For close to a decade, a special taskforce of Canadian PH medical professionals has been working behind-the-scenes on developing a National PH Registry for Canada. And now after testing it out at the Vancouver PH Clinic since January 2017, they have begun the process of recruiting clinics from across Canada to adopt the system. 

We had the pleasure of interviewing two members of the committee who are helping to lead the project. Lena Legkaia is the project manager; her focus is to facilitate and coordinate the national implementation of this new clinical database system in PH clinics across the country. Lisa Lee, nurse practitioner (NP) at the Vancouver PH clinic, offers her first-hand expertise in the treatment of PH patients and the importance of such a registry. 


To start us off, could you tell us in simple terms what a registry is? 

Lena: Registries are very common tools that we see in everyday life. A registry is simply put a program where you store data. They’re very useful in the health sector because they allow us to better understand overarching trends and make educated decisions on how to improve or adjust the way patients get treated. 

Lisa: Countrywide registries are not a new concept, but this is a first time an effort to implement a Canada-wide PH registry has been made. Health registries are actually very common in the world of pulmonary hypertension and rare diseases in general, because not a lot is known about people who have rare diseases. 

What are you hoping to achieve? 

Lena: The overreaching goal is to have patients’ data entered into a database so that down the road, researchers can go— with approval, of course—look at the data and figure out where we need improvement, what is working, and what isn’t. We can assume that PH patients in Canada are the same as in the USA and EU (European Union), but we don’t actually know. For example, because different provinces have different drugs available for treatment, are patients in certain provinces being treated as well as they are in other areas of the country? 

Lisa: Primarily we will look at mortality—so, do patients who have PH in Canada live as long as patients in other countries? There are a lot of other things we look at: a lot of the big drivers right now in the world of registries and PH is looking at risk, so how can we tell that you’re at risk or that your PH is at risk of progressing? Well, they take all this information on all these patients and they see what kind of patients do well and live for a very long time, and then what are the kinds of patients that do poorly. And what are those indicators that are letting us know that a patient might get worse over time, so that we know actually when we can intervene earlier in terms of treatments or different therapies for their pulmonary hypertension. 

I imagine privacy must have been a pretty big topic when planning for this project? 

Lisa: That was definitely one of the major concerns; it’s one of the things that we spent a lot of time working on. There’s a lot of oversight from both health authorities and the government in terms of making sure this data can’t accidentally get out into the general public. No one will get access to the patients’ individual data, it will be amalgamated—kind of de-identified—information. It won’t be, you know: “Mr. Bob has this kind of PH, and he tried this medication, and got better”. It will be shown like: “We have 750 patients who have pulmonary hypertension in the clinic. These are the types of PH that they had. These are the types of patients that did well. These are the types that did poorly”. 

Lena: Clinics are using a coded master list where the software generates a random number for each patient that is in the database. And then that number can be linked to their name, but that is stored at the clinic: nobody gets to see it but the physicians and the nurses. So the computer program doesn’t actually contain any personal identifying information, only a number and the corresponding health history. 

Do patients have the option of opting out if they don’t want their information included? 

Lena: Yes, patients can always opt-out. It’s a requirement that the clinics get a signed consent from patients when entering their data into this new registry. 

Lisa: Interestingly though, we haven’t had any push back from patients. We’re having our unit clerks collect the consent forms upfront so it’s not like they’ve had to do this big in-depth discussion. Patients are mostly like “oh, you’re collecting information to improve PH research? I’m happy to sign up” The information is safe so there really hasn’t been an issue. 

How does this affect the clinics? 

Lisa: If you can imagine, we have 700 patients in our clinic: the amount of resources and infrastructure to coordinate this both on an individual clinic basis is already a lot, and then getting together very busy PH clinics on top of that. We have to figure out which software you’re using, submit ethics and research applications, all this kind of stuff. But ultimately, really, what the big change is going to be is that hopefully we get really great information that will help us improve the quality of care for patients. That is our overarching goal. 

How has the reaction been amongst the clinics? 

Lena: Great, they’re all excited to do it. It’s just resources; it takes time to implement something like this. Each clinic has to take time out of their busy schedules to actually put it in, submit an ethics application. But that’s why I’m here: to help guide them and present them with the general protocol—which they obviously adapt to their own clinic before submitting to ethics— and I help them with their basic IT hurdles. 

Lisa: Our goal is to get two to three clinics per year on board. We’ve been meeting that target consistently so far, and it looks like we will continue to do so up until 2019. 

Recent News


Get the latest on PH treatments, community events and more when you subscribe to our newsletter