Myotonic Dystrophy: EPIC Functions at The Ottawa Hospital

In 2019, the Ottawa Hospital (TOH) introduced a new Electronic Health Record system called EPIC, to move documentation such as orders for blood work, prescriptions, notes and letters from paper-based to online digital formats. This involved a major investment in education and training of hospital staff.

 

A recent initiative highlights how EPIC functions can be tailored to improve the safety of patients with a rare muscle condition called myotonic dystrophy (DM). DM is a genetic condition that leads to muscle weakness and wasting, and to additional health issues such as cardiac arrhythmia, cataracts of the eyes, diabetes, constipation, and disrupted sleep. DM patients also respond with severe side effects to a range of medications and anaesthetics.

 

At the Neuromuscular Centre at TOH there are more than 50 patients with DM under the care of neuromuscular specialists, who aware of the specific risks and health issues associated with DM. However, DM patients frequently need to seek medical attention at other TOH departments, whose staff may not be aware of the DM diagnosis or the specific risks associated with prescriptions.

 

Inspired by a DM family from Ottawa, the TOH medical information team has designed a new EPIC functionality, so-called Best Practice Advisories (BPA), to keep DM patients safe throughout the hospital. Firstly, a side panel alert informs doctors and nurses accessing the patient’s records about the DM diagnosis and provides guidance through a specific “standards of care” document that has been devised by international experts together with the Myotonic Dystrophy Foundation. Secondly, a specific warning will be displayed if the doctor attempts to order a medication that is considered potentially unsafe for DM; to proceed with the order, they are required to acknowledge the warning and explain their reasons.

 

The new BPAs went live in June 2021. If successful, they may be adopted by other hospitals and organisations in Canada to keep DM patients safe.

 

The Neuromuscular Disease Network for Canada (NMD4C) is a network of clinicians, scientists, patients and patient advocacy groups, committed to improving the care, research, and treatment of neuromuscular diseases for all Canadians. The network is encouraged to see projects such as this that engage multiple stakeholders, identifying and addressing issues from different perspectives and fostering collaborations that deliver impactful outcomes.

 

For further information please contact:

James Davis, NMD4C Communications Coordinator

EPIC_DM

Read next...

2024 Dr David Green Award winners from MDC

NMD4C Receive Excellence in Service Delivery Award and Network Investigators Honored as part of Muscular Dystrophy Canada’s 2024 Dr David Green Awards

We are excited to share that the NMD4C has been awarded the Excellence in Service Delivery Award, one of the annual Dr David Green Awards presented by Muscular Dystrophy Canada.

NMD4C logo with text reading 'Canadian neuromuscular clinical trials network', MDC and IMHA logos at bottom.

NMD4C Launch Canadian Neuromuscular Clinical Trial Network

We are thrilled to announce the launch of a Canadian neuromuscular clinical trial network (CTN) as a part of our clinical research work.

Event organizers and participants from SMA outcome measures training, March 2024 in Quebec.

Training Session for Physiotherapists and Occupational Therapists on Outcome Measures in Spinal muscular atrophy hosted by Quebec SMA Network

This past March 23, the Quebec SMA Network (Réseau québécois de l’amyotrophie spinale – RQAS) in collaboration with the NMD4C and Muscular Dystrophy Canada (MDC) hosted an interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal muscular atrophy (SMA). This training gathered clinicians to train and discuss SMA standardized outcome measures and work through current problems/challenges, to improve how these measures often tied to drug reimbursement are conducted. 

MDC award $900 000 towards clinical and translational research projects in 2024.

MDC Announce Recipients of 2024 Neuromuscular Clinical and Translational Research Grants

Muscular Dystrophy Canada (MDC) recently announced the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects.

SMA outcome measures training graphic

SMA Outcome Measures Training for Physiotherapists and Occupational Therapists

To support the development and training on validated NMD outcome measures we are pleased to provide opportunities for physiotherapists and occupational therapists to attend training sessions for outcome measures.

Congratulations to the 2024 early career award winners. Dr Mireille Khacho and Dr Jean-Philippe Leduc Gaudet.

Congratulations to the 2024 NMD4C Early Career Awards Recipients

We are excited to announce the recipients of the 2024 NMD4C Early Career Awards! This is the second year of our annual award program, celebrating excellence and contribution to the neuromuscular field from early career investigators across both clinical and basic science streams.