Transforming Scientific Inquiry: Tapping Into Digital Data by Building a Culture of Transparency and Consent

With over 1.7 billion individuals engaged in social media, patients and consumers share more about their lives than ever before through wearable devices, smartphone applications, and social media outlets. This cornucopia of data offers significant opportunity for health researchers and clinicians to track and explore how digital presence contributes to patients' health outcomes and use of health care resources. While patients readily share their information with online communities, it is imperative that they maintain a sense of autonomy over who has access to such data. Recent data breaches of major insurance companies and retailers illustrate the challenges and vulnerabilities related to information safety and privacy. Many Web sites and mobile apps require users to agree to data policies, but how those data are mined, protected, used, and externally shared is frequently nontransparent, resulting in a climate of fear and distrust around all forums of digital information sharing. Although such skepticism is perhaps justified, it should not deter health researchers from attempting to collect and analyze these novel data for the purpose of designing unique health interventions. By clarifying intent around digital data acquisition, simplifying consent procedures, and affirming a commitment to privacy, the authors contend that health researchers can partner with patients to transform the boundaries of scientific inquiry.