Ontario hospital launches e-library to help patients make tough decisions

Family Decision Guide
The Ottawa Family Decision Guide, part of CHEO's Decision Services website. (Screengrab). CHEO / Screengrab

TORONTO – When you or someone you love gets sick or develops a serious illness, there are a lot of questions and potentially tough decisions to be made, but a new online tool aims to help ease the stress.

The Children’s Hospital of Eastern Ontario (CHEO) has published what they call “the first comprehensive electronic library of pediatric patient decision aids in the world.”

A patient decision aid is a standardized information package that’s based on research and developed by clinicians from all over the world.

What’s new is that CHEO has assembled them in one location so they’re easy to find and use.

The library—an “A to Z inventory”—includes 58 tools that help families make decisions on various health topics i.e. three links on ADHD, three on ear infections, four on immunizations.

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The resources clarify the pros and cons of getting your daughter the HPV vaccine, for example. Subjects include acne and allergies to more serious topics of mental health, thyroid disease and kidney failure.

Here’s an example from the diabetes section, for people who are deciding whether or not to get an insulin pump:

Diabetes patient decision aid
A diabetes patient decision aid from HealthLinkBC, via CHEO’s e-library. (Screengrab) HealthLinkBC / Screengrab

The library links to patient decision aids on various subjects to help people get involved in discussions with their healthcare providers, consider multiple options for treatment and choose the option that best fits with their personal values.

CHEO has also created an “Ottawa Family Decision Guide” for people facing health decisions to fill in (pictured above). The guide, developed in Ottawa but relevant to anyone, is essentially a worksheet where you can write out your options, reasons for and against, how much each reason matters to you, and how the decision will affect others in your family. The goal is to break down your decision by first clarifying it, exploring options, and planning your next steps based on your needs.

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The inventory links to other publicly available resources for patients from all over the world, which unfortunately means some of the treatments are not available in Canada.

In addition, the hospital urges patients to use the e-library in addition to consulting your healthcare professional, as it isn’t intended as a replacement.

“Using patient decision aids enables better information sharing between families and the health care team, creates more realistic expectations and a better match between families’ preferences and treatment choices,” said Dr. Margaret Lawson, medical director of CHEO’s Family Decision Services, in a release.

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CHEO also cites research that suggests “lack of family involvement in decision making contributes to unwarranted practice variation, undermines evidence-based practice, and threatens patient safety.”

In addition to the 58 aids available today, there are 11 additional aids currently under development, including asthma and appendicitis resources. CHEO says the library is continuously updated so as soon as the aids are completed, they will be added.