Angelina Jolie and Medical Decision Science

Movie stars lead glamorous lives, attract enormous attention, and inspire popular lifestyle trends. Angelina Jolie, in particular, has been Hollywood’s highest paid actress in multiple years, cited as one of the world’s most beautiful women, married to perhaps the sexiest man alive, and empowered as a formidable marketing force. Her latest movie, Maleficent, generated total revenues greater than $700 million, an amount that could fund an entire medical center for more than a year. Her humanitarian efforts include being appointed Goodwill Ambassador for the United Nations High Commissioner for Refugees and channeling millions of dollars toward funding worthwhile charities. Many clinicians, scientists, and politicians might dream about having the influence of Angelina Jolie. On May 14, 2013, Angelina Jolie disclosed in an editorial titled ‘‘My Medical Choice’’ that she had tested positive for a breast cancer gene (BRCA1) and undergone prophylactic bilateral mastectomies with breast reconstruction. The immediate reaction led to widespread public attention including front-page stories in mainstream media and a doubling of subsequent referrals for BRCA1 genetic counseling at some hospitals. Her disclosure is also credited for helping shape the US Supreme Court deliberations on June 13, 2013, disallowing patents for isolated genes and potentially prohibitively expensive gene testing. In our opinion, no single study in medical decision science is likely to receive this amount of instant high-profile media attention. In the present issue of the journal, Seth Noar and colleagues provide a rigorous analysis tracking online search activity before and after the Angelina Jolie disclosure. The methods involved accessing the Google Trends database from January 1, 2010, to December 31, 2013, for daily searches related to breast cancer genetics and treatment queries (along with other relevant search terms). The findings indicated a large temporary surge in queries about genetics and treatment, a modest increase in queries about general information and risk assessment, and a rapid return to baseline after about 1 week. The implication is that Angelina Jolie spurred significant informationseeking about breast cancer genetic testing for a short time. The lack of sustained activity also underscores the fleeting nature of fame and public attention. Researchers in other fields might apply the same methods for informing their own studies of acute illnesses, chronic diseases, medical treatments, or unforeseen crises. The Google Trends database allows single or multiple combined word searches to organize each investigation toward relevant items. The resulting data are numerical, longitudinal, reproducible, accessible, immediate, and free. Another strength is the ability to stratify online trends by geographic region and thereby avoid selective reporting from a few outliers. A downside, however, is the need for statistical sophistication since the actual data are normalized as ‘‘relative search volume,’’ which hides the actual count of people involved (a restriction that protects the proprietary interests of Google Inc.). This type of research has been termed infodemiology and defined as the science examining the determinants and distribution of health information on the Internet. The general design involves monitoring Received 1 October 2014 from the Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada (JB, DAR); Evaluative Clinical Sciences, Sunnybrook Research Institute, Toronto, Ontario, Canada (JB, DAR); Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada (JB, DAR); Institute for Health Policy Management and Evaluation, Toronto, Ontario, Canada (DAR); Division of General Internal Medicine, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada (DAR); and Center for Leading Injury Prevention Practice Education & Research (DAR). Dr. Redelmeier is supported by the Canada Research Chair in Medical Decision Sciences. Revision accepted for publication 16 October 2014.