Updated November 28, 2017

A group of ALS clinicians across the country is developing Best Practice Recommendations to set a common standard of care for Canadians living with ALS. Dr. Christen Shoesmith of the London Health Sciences Centre explains. She will be speaking about the Canadian ALS Best Practice Recommendations at the Virtual Research Forum on August 9. Read more and register here.

Why is it important to have best practices in patient care?

In Canada we really feel that it’s important that each patient, no matter whether or not they live in Nova Scotia versus Quebec or BC, all get the same type of care. And that they have the same access to that type of care.

Best practices are extremely important for advocacy for our patients, and establishing what is a standard of care across the country. Without practice guidelines in place, there may be inconsistencies about patient care across the country, or between provinces. But it’s very difficult to decide which province is doing the best. And so if we have a standard set between the provinces, it’s very easy to say a province is not providing the best care for the patients because they’re not meeting the standard that we have set. And providing these Best Practice Recommendations will allow us to know exactly what is the standard, what is the measure at which all the clinics should be measured and all the patient care should be measured against. That will help in both providing excellent care to the patients because the patients deserve the best and most appropriate care for their disease, but also to advocate, to make sure that they have the resources in place to have that best care.

Setting a baseline will make sure that patients get that standard of care for their disease. The other thing is it also speaks to the ability to change, and that we need to have a process that we can adapt and continually review to make sure that we don’t need to make changes as things change.

Right now, we only have a single medication that is approved by Health Canada, but having a guidelines process in place and a group of people that look at the guidelines regularly, will make sure that if there is a new medication that is introduced, that we can adapt that quickly, and so that we can make sure we advocate for our patients to get new treatments as they become available.

One of the big things that we’ve got within our provinces is that we do have a rural versus urban distribution, and so these guidelines will also make sure that those patients that live in northern communities, that may be remote from some of the ALS centres, will get the same type of care. Because even if that patient is unable to travel to the centre because of the geographical distance, their physicians in their local centre will know what the standard of care is so that they can try their best to provide that standard of care for the patient in their local community.

Who has been involved in developing the Best Practice Recommendations? 

We have a number of ALS clinicians across the country that have been involved. We try to do our best to have a geographical representation of clinics across the country. We have someone from Nova Scotia, from New Brunswick all the way over to Alberta. They’re all ALS clinicians in clinics, so they’re either the director of the clinic or a physician that works in the ALS clinic. So we do have a broad representation. And at this time, we have nine active clinicians on the committee that are working at these guidelines.

These guidelines are based on our real-life experiences with how we treat patients and how we manage those patients in our clinics.

How has the development of these Best Practice Recommendations been funded?

We are very, very thankful that ALS Canada has decided this is a very important endeavor, and they recognize that fact for the last few years. And they have supported our project. And we’re very grateful for their support because without it the guidelines would not have been produced.

ALS Canada Virtual Research Forum

Update: Dr. Shoesmith was one of more than 20 speakers who participated in the ALS Canada Virtual Research Forum in August. Some presentations from the forum are available online here.

Posted in: Research