JMIR Publications

ABSTRACT

Background:

Internet-based risk assessment tools have become a potential avenue for people to learn their cancer risk and adopt risk-reducing behaviors. However, there are concerns over the quality of experiences people might have when using these risk assessment tools. Furthermore, Internet-based risk assessment tools may not adhere to scientific understanding of what constitutes “good” risk communication strategies.

Objective:

To understand the extent to which current best practices in risk communication have been applied to cancer risk assessment tools available on the Internet.

Methods:

In May 2019, we conducted an Internet search to identify websites that provided people with personalized assessments of their cancer risk, or likelihood of developing cancer. We identified 39 risk assessment tools and coded each according to standardized criteria. Three broad coding categories were examined: general website characteristics, accessibility and credibility, and risk communication formats and strategies. Simple frequencies were calculated and recorded for all coding categories.

Results:

Sixteen cancer types were addressed by the calculators, with colon/colorectal, breast, and lung the most common. The most common developer was the healthcare industry, hosting just over 25% of websites. Despite fewer than 25% of websites indicating medical professionals were the intended audience, close to 90% of websites included technical language that members of the general public may find difficult to understand. Only 59% of websites indicated the scientific model used to calculate users’ cancer risk. Formats and strategies that can be useful for encouraging behavior change were present in less than half of the websites, with only 43.6% providing social comparison information.

Conclusions:

Many Internet-based cancer risk assessment tools communicate information in a way that is likely to be confusing or misunderstood, with three themes emerging from this current review. First, undefined medical terminology was widespread, making these tools difficult to understand for those with limited health literacy. Second, websites did not include sufficient information for users to determine the credibility of the risk assessment tools, making it difficult to determine the extent to which their personalized risk estimate is scientifically valid and/or personally relevant. Third, practices known to foster unbiased comprehension of risk are not reaching organizations that develop risk assessment tools—a concern, as these tools are more readily available on the Internet than ever before. Improving the quality of communication of Internet-based risk assessment tools will limit confusion and foster understanding of cancer risk information among users. By observing best practices, Internet-based risk assessment tools could communicate information more effectively for people to make informed decisions and motivate people to engage in risk-reducing behaviors.