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Fox Chase Researchers Warn That Website Terms of Use May Deter Research

November 30, 2020

PHILADELPHIA (November 30, 2020)–Researchers at Fox Chase Cancer Center have published a letter cautioning that website terms of use may limit how researchers can use online data, particularly with respect to online physician review information. Websites may require researchers to obtain permission to use online resources in research.

Researchers and physicians are interested in using data from physician rating websites to understand the characteristics associated with positive and negative reviews on these sites. However, much of the published research on this topic is unclear about whether investigators complied with website owners’ terms of use stipulations in doing so.

As the Fox Chase researchers wrote in their letter, using this data without permission may violate some terms of use agreements. This could hamper attempts to investigate the validity of online review data should website owners choose to enforce their terms of service and restrict future research.

The researchers wrote the letter in response to an article examining the online ratings of vascular interventional proceduralists with the goal of raising awareness of the issue of permission because it may be fairly new. The letter was written by Brian Egleston, MPP, PhD, an associate research professor in the Molecular Therapeutics program; Krisha Howell, MD, assistant professor in the Department of Radiation Oncology; and John McNeill, director of research contracting.

“Five years ago, the terms of service might not have been as comprehensive, so I think that this is kind of a new issue for researchers to think about going forward when they want to use website data,” Egleston said.

He added that many researchers using online physician review data may believe that because the information is on the internet, they don’t need permission to use it. “People like me who are data analysts or biostatisticians are used to signing data use agreements and thinking about data being owned by someone. I don’t think some researchers have thought through what terms of service even mean.”

The three were compelled to write the letter after having difficulties in conducting a study using physician review data from Vitals.com and Healthgrades.com. When they first set out to gather the data, they repeatedly tried to get in touch with the companies to request permission and consulted with Fox Chase administrators to clarify the websites’ terms of service requirements. They were unable to get responses from the website owners.

Egleston said that the companies’ failure to respond may not necessarily indicate an unwillingness to grant the use of their website data; they may simply lack a designated contact person or the bandwidth to respond to such requests. However, the researchers decided it was not a risk worth taking.

Efforts to raise researcher awareness of issues surrounding the use of website data are particularly relevant in light of a standoff between New York University and Facebook over researchers’ freedom to use data obtained from the latter organization’s website. The researchers have argued that they should be free to collect information about what political ads Facebook shows to users in order to increase transparency around the 2020 election and to combat the spread of disinformation.

However, their method of data collection—a browser plugin that gathers information from Facebook—violates Facebook’s terms of service regarding collecting data in bulk. Facebook has demanded that the University end the project and delete any data it has collected by November 30, 2020, or risk facing further enforcement action.

The paper, “Website Terms of Use May Limit Research About Online Physician Reviews,” was published in Annals of Vascular Surgery.

The Hospital of Fox Chase Cancer Center and its affiliates (collectively “Fox Chase Cancer Center”), a member of the Temple University Health System, is one of the leading cancer research and treatment centers in the United States. Founded in 1904 in Philadelphia as one of the nation’s first cancer hospitals, Fox Chase was also among the first institutions to be designated a National Cancer Institute Comprehensive Cancer Center in 1974. Fox Chase researchers have won the highest awards in their fields, including two Nobel Prizes. Fox Chase physicians are also routinely recognized in national rankings, and the Center’s nursing program has received the Magnet recognition for excellence five consecutive times. Today, Fox Chase conducts a broad array of nationally competitive basic, translational, and clinical research, with special programs in cancer prevention, detection, survivorship and community outreach. It is the policy of Fox Chase Cancer Center that there shall be no exclusion from, or participation in, and no one denied the benefits of, the delivery of quality medical care on the basis of race, ethnicity, religion, sexual orientation, gender, gender identity/expression, disability, age, ancestry, color, national origin, physical ability, level of education, or source of payment.

 

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