Understanding the Online Information Landscape for Lung Cancer Patients and Their Caregivers

WRITTEN BY

Paul Naish, Director, Oncology Advocacy & Government Affairs

I’ve heard doctors say that they tell people diagnosed with lung cancer not to Google their disease. Why?  Because they’re worried about the bleak picture often portrayed of lung cancer online.  They’re also worried about the inaccurate and incomplete nature of the accessible information, and the sometimes incomprehensible language that means patients may come away with more questions than answers.  However, I’ve also heard patients say they don’t always listen to their doctors, and with over two million people diagnosed with lung cancer every year and one in 20 Google searches being health related, we can make a reasonable assumption that lung cancer patients are very likely to search for information about their disease online.[1],[2]  We wanted to know what patients would find.

To help understand this area we initiated a research project in 2018 to learn more about the online information landscape for lung cancer, and to identify areas for improvement to ensure patients can be well informed.[3] Researchers in 11 countries - Belgium, Canada, France, Germany, Italy, Japan, the Netherlands, Spain, Switzerland, the UK and the USA - entered 22 lung cancer search terms into Google and mapped the search results that appeared on the first page (we know that people rarely go past the first page of search results).[4] The websites were analysed to identify the content they included, the owners of the websites, and the intended purpose of the information.

The results showed that sources of lung cancer information differ between countries. Fewer patient group websites appeared in searches compared to websites provided by other types of stakeholders, which may be due to poor search engine optimisation of their pages.  In addition, the results were dominated by news outlets which are often fueled by hot topics and latest trends, rather than the desire to share basic information. Over one-third of search results for ‘IO for lung cancer’ resulted in news articles, in which IO therapies were often mentioned singularly and as ‘miracle cures’, without providing necessary context around patient eligibility. Searches for ‘newest’ or ‘most effective’ treatment options are almost twice as likely to return results for IO over targeted therapies (52% vs 24% [24% of searches included neither class]), which may prove problematic if a patient has oncogenic driver mutations.  This dominance of news outlets is something that all online patient information providers need to consider, with potential actions needed around ensuring that such outlets link to further information that helps patients understand context and the full picture.
 


We found that information on treatments was often complex, targeted to healthcare professionals, or was incomplete.
Information from news outlets targeting healthcare professionals, from professional organisations and from healthcare provider organisations can sometimes be too technical/scientific for patients. More than one-third of searches for information on targeted therapies are directed to a peer-reviewed journal or healthcare-trade publication, which are designed for healthcare professionals rather than the public

 


Online lung cancer information is not always up-to-date. While information from patient organisations and online health resources tends to be balanced and well rounded, it may not be frequently updated. We noticed that websites were more likely to focus on the three mainstays of chemotherapy, radiation therapy and surgery than newer classes of therapies, thereby leaving patients with an incomplete picture of their treatment choices.
 


So how do we best address the patient information gap? With patients accessing information from websites hosted by a variety of sources, including media, professional organisations and advocacy groups, it’s important for a collaborative effort across stakeholders to address patient information needs.

This week we’re sharing guidance on our Twitter channel on how to evaluate information found online, and we’re working with our partners to ensure that not only is the information hosted on their websites as up-to-date and easy-to-understand as possible, but that their search engine optimization (SEO) ensures that patients looking for trustworthy information can find it.
 


As scientific understanding in cancer continues to advance, it is critical that patients looking to learn more about their disease and potential treatment options can find the information they need. We make this commitment as part of our broader effort to support scientific literacy and ensure that we’re addressing the needs of patients at every stage of disease. 
 

References

[1] Google. A Remedy for Your Health-related Questions: Health Info in the Knowledge Graph. Available at https://googleblog.blogspot.com/2015/02/health-info-knowledge-graph.html. Accessed March 2019.

[2] International Agency for Research on Cancer (IARC). New Global Cancer Data: GLOBOCAN 2018. Available at https://www.uicc.org/new-global-cancer-data-globocan-2018. Accessed March 2019.

[3] Naish P, Purdy E. Information for Lung Cancer Patients and Their Caregivers: A Systematic Analysis of the Online Landscape. Abstract 202P. Presented at the European Lung Cancer Congress (ELCC 2019), 10-13 April 2019, Geneva, Switzerland.

[4] 1Junto. SEO Stats for 2019. Available at https://junto.digital/blog/seo-stats/. Accessed April 2019.


Veeva ID is Z4-16184