Integrating technology and the patient voice in MS care

By Ana Gajic

The BARLO MS Centre, which will open its doors at St. Michael’s Hospital, aims to make the patient experience more seamless for those living with Multiple Sclerosis (MS).

MS is a neurological disease with the highest prevalence in Canada. It affects two to three times as many women as men and generally strikes people in their early 30s. While there are treatments, there is currently no cure.

Dr. Xavier Montalban, medical director of the BARLO MS Centre, sees MS patients in the hospital’s current MS clinic and conducts global-reaching research into fighting the disease and enhancing the patient experience.

We sat down with him to learn about the vision for the centre and MS care at our organization.

What is a focus area for your team in the lead-up of the BARLO MS Centre opening?

With the new centre and even before it opens, our team is integrating the importance of the patient voice into our care. We call this Patient-Reported Outcomes, or PROs.

PROs track what the patients think is happening to them. You can have PROs for many things, such as quality of life, fatigue, cognitive dysfunction, emotional state or depression.

Why is it important to measure PROs for MS?

Sometimes there is a clear disassociation between what the neurologist thinks and what the patient feels. This has been very well studied. Nowadays to make a decision to switch to a new treatment, you base your decision on objective disability measures or relapses, but not PROs.

Integrating PROs gives patients power. We also want to study and understand the predictive value of PROs. Imagine if a patient tells me today that they think their memory is failing and their speed in processing information is slow, but nothing shows up on tests. Then after three years we see that the patient has a higher degree of disability, as shown by objective tests such as MRIs. Patients’ perspectives could impact the way we deliver care.

How will your team work with patients to integrate PROs and enhance their experience?

We are in an era of digital technology and our care can reflect that.

We are looking at working with different technology not only to enable PROs, but also to extend our care. Some of our patients drive many hours and kilometres to see us once a year. Using technology, such as wearable devices, maybe we can increase their access to us.

Devices such smartphones or smartwatches offer the potential to capture more granular data about MS symptoms than traditional assessments. This improvement in the evaluation of our patients could modify our therapeutic decisions and improve the patients’ prognoses.

The nucleus of the best experience for our patients is integrating their voices and using technology to enhance care delivery.

About St. Michael’s Hospital

St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in more than 27 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the Hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael’s Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.

About Unity Health Toronto

Unity Health Toronto, comprised of Providence Healthcare, St. Joseph’s Health Centre and St. Michael’s Hospital, works to advance the health of everyone in our urban communities and beyond. Our health network serves patients, residents and clients across the full spectrum of care, spanning primary care, secondary community care, tertiary and quaternary care services to post-acute through rehabilitation, palliative care and long-term care, while investing in world-class research and education. For more information, visit www.unityhealth.to.