In a unique partnership, Boehringer Ingelheim, St. Joseph's Healthcare Hamilton, and McMaster University have come together to transform the way patients are supported at the onset of a diagnosis related to interstitial lung disease (ILD). This collaboration marks a significant leap forward in patient-centric care, driven by empathy and understanding. The outcome — the creation of the myILD Kit.
ILD can be a challenging, life-altering diagnosis. ILD is a group of conditions characterized by scarring of the lungs. ILD can evolve to a Progressive Fibrosis-ILD (PF-ILD) leading to breathlessness or worsening respiratory symptoms, reduced quality of life and early mortality.1 Patients with ILD often have limited access to expert centres and minimal support and educational materials.
Students from McMaster's Faculty of Engineering in the W Booth School of Engineering Practice and Technology embarked on an extraordinary journey to better understand the unique needs and challenges faced by people living with ILD. After interviewing patients, caregivers, healthcare professionals, researchers, along with focus groups and co-design sessions, the design team gained profound insights into the journey of ILD patients and developed the myILD Kit.
"Having the opportunity to work with ILD patients has been a deeply humbling and rewarding experience. Their insights, openness, and resilience have guided our work and reaffirmed the idea that an empathetic approach can have a profound impact on patient experience," said Jonathan Pusic, Mohammed Syed and Santiago Leon, McMaster students. "The success of this kit is a testament to the power of collaboration between academia and industry and shows that by keeping the patient perspective at the forefront we can create solutions that provide comfort, support, and hope to those facing the most profound challenges."
The myILD Kit is a comprehensive package of supports and resources for those recently diagnosed. Early intervention is critical in delaying the progression of ILD symptoms, and the myILD Kit guides patients through the initial period of uncertainty and confusion, helping them take proactive steps to manage their physical and mental health effectively. It empowers patients with vetted medical information, immediate connection to a supportive community, and practical tools to adapt to their new life with confidence.
"ILD is a complex, life-altering disease where Canadians often do not get the information they need at diagnosis. By working collaboratively with a patient-centric approach, we are addressing patient needs at the onset to ensure that everyone has timely access to the information and care they need," says Annie Beauchemin, Head of Market Access, Boehringer Ingelheim Canada. "With this partnership, we aim to make a positive impact for Canadians living with ILD."
The myILD Kit, pictured below, includes:
- A welcome letter from a patient community, offering vital support group information.
- A disease journey map to help patients navigate their new reality.
- A pulse oximeter, enabling patients to monitor their lung health.
- A journal for patients to record their experiences and emotions.
"You can just imagine the levels of anxiety and depression that ensues with a diagnosis," says Tim Brady, who was diagnosed in 2017 and describes the lack of patient support during his initial diagnosis as common among other ILD patients. "With the myILD kit, the journey and resources will be laid out in front of them instead of using the internet to find out."
Boehringer Ingelheim Canada, St. Joseph's Healthcare Hamilton, and McMaster University are committed to transforming the ILD patient experience. This partnership reflects a shared dedication to improving the lives of those affected by lung diseases and fostering a sense of community and support from the very moment of diagnosis.
"By focusing on healthcare innovation and leveraging key partnerships in academia, industry, and our community, St. Joe's is working to improve the patient experience in creative ways," says Dr. Jeremy Hirota, Associate Professor of Medicine at McMaster and respiratory scientist at St. Joe's. "Our hospital is committed to advancing new strategies, devices, and therapeutics that will help our patients. This work is possible thanks to the strong relationships we've built with partners such as Boehringer Ingelheim and the W Booth School in the Faculty of Engineering at McMaster."
