UCalgary grad student part of worldwide effort to develop open-source tool for children’s palliative care providers

Advocating for more investment in children’s palliative care is something University of Calgary Master of Nursing (MN) graduand Erin Das has been working on for the last year.

As a palliative care nurse currently leading practice at the Global Treehouse Foundation — an organization focused on ensuring every child can receive palliative care — Das is determined to help improve gaps in the system with the Magnify Tool.

“The Magnify Tool is a customizable tool for children's palliative care providers to explore and understand their data from their service, as well as their information as a team,” she says. 

Originally from Toronto, Das has lived outside Canada for the last 13 years and is currently based in Nairobi, Kenya. 

Palliative care is provided to patients and their families coping with a serious illness. Although the term is often associated with end-of-life care, this is not always the case — some people receive palliative care for years. Das says the Magnify Tool was made to directly address barriers surrounding data collection in the field, given the sensitive nature of palliative care.

Some of this data includes patient- and family-reported outcomes, measuring adherence to clinical guidelines, tracking access to allied health services and more.

“Within the field of children's palliative care, understanding information and data based on their services can be a real challenge,” she says. “We feel that, as teams can better understand their data and information, they can in the future improve the services, looking towards giving children and their families the best care possible.” 

The tool’s creation was the result of a worldwide collaboration. 

“It has been designed by over 60 contributors from over 20 countries, which represent six continents, which is great,” says Das. “It ensures it's relevant and it's applicable across a wide variety of settings.”

When it comes to accessing the Magnify Tool, Das says it’s free to download as a document on the Global Treehouse Foundation website for children’s palliative care providers and can be adapted to teams' needs in hospitals, hospices and community-based programs.

“We were able to create a tool that has over 100 metrics aligned on 10 different focus areas, from holistic clinician practices to family considerations and patient-reported outcomes,” she says. “It's free and it can be used with some embedded resources to offer real-world case examples.”

Das’ motivation to work on the tool and advance palliative care started when she was younger when her sister was battling cancer. It showed her the impact quality nursing care of children with serious illness makes.

“It was around that time that I started thinking about my career and I could see how nurses engaged with my sister when she was getting her cancer treatment,” she says. “I could see the power of a nurse.”

Das recently completed her MN and expects to convocate this fall. She did the laddered pathway to her MN via the graduate certificate specializations in Palliative and End-of-Life and Leadership for Health System Transformation at the Faculty of Nursing. She says her education at UCalgary helped prepare her to take on this project.

“With topics such as innovation, change management using knowledge to practice frameworks, focusing on proposal writing and research — these are the skills that I use in my work every day now,” says Das. “I'm really proud to say that I'm a graduand of this program.”

With her all her colleagues using the tool, Das hopes to transform children’s palliative care.

“Even though children's palliative care is a heavy area of medicine and nursing, I want my colleagues to know that they can do this — they can collect data even when it's difficult and they can find ways to improve services,” says Das. 

“I hope part of the thing that this tool can foster is a community of individuals that are interested in finding ways to implement best practices.”