Survey: Canadian Thyroid Testing Tips & Challenges

We’re trying a new strategy to crowdsource data on Canadian thyroid patients’ access to thyroid laboratory testing.

For a limited time, we are test-driving an anonymous survey with a real-time report that displays up to date statistics and results.

Take the survey

Here’s the link to the Canadian Thyroid Testing Tips & Challenges survey page.

About the survey

At this time, the survey is only for Canadian thyroid patients.

If this test-run goes well, we may launch some international surveys in future.

The survey asks you what city and province you live in, which lab blood was tested at, whether FT3 and other thyroid tests were successfully completed, what tests were cancelled, what kind of doctor ordered the tests.

It also has a place for you to express opinions on thyroid testing, such as what tips you have about getting tests done across the country.

The survey may need to be closed at any time, but the data may remain on display. It takes time and effort to oversee and moderate to make sure people are not misusing the survey tool.

Survey Features

The free survey technology we are using is Google Forms.

It permits an unlimited number of questions and many features that are only available for a fee on most paid platforms like Survey Monkey.

Screenshot of some questions:

Google Forms Results

Google Forms has a tool for displaying results to date, but it only displays them question by question, and the formatting is often clunky.

It can’t correlate these two questions below — it can’t answer the question “Among the doctors who ordered FT3 and it was successfully tested, who gave a reason?”

Screenshot as of December 24, 2019

Google Data Studio Reports

Data we receive will also be displayed publicly on the same page as the survey, through another free Google app, Data Studio.

Data Studio allows for more options for data displays, including mapping and tables.

(Screenshot from December 24 at 5:25p mountain)

Pros and cons of such “surveys”

These surveys are not by any means “research” instruments.

The data cannot be verified for accuracy. The tool can be misused by people writing fake or spammy comments. It need moderators to clean data from time to time.

Real research surveys require ethics approval, consent forms, privacy and data protection, and are subject to legal constraints.

On the other hand, There are benefits to doing things this way.

Anonymous surveys are a way of getting thyroid patients’ voices and experiences out there quickly and without much bureaucracy and red tape.

When thyroid patients’ health is at risk, time is of the essence. We just can’t wait until everything is perfectly ready. We have to move forward using the information sharing tools we have at hand.

In future, we may find a way to make survey data more verifiable and of high quality. That will require participation identification and privacy protections we don’t have the capacity for at the moment.

Will people use this tool? Will it be too messy and hard to manage? Will it lead to any action?

Let’s see how it goes and learn from experience.

It’s better than doing nothing, or waiting too long to try.

Take the survey

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