A survey of United States adult privacy perspectives and willingness to share real-world data

Abstract

This version may be subject to change during the production process.

A Survey of Individuals’ Willingness to Share Real-World Data Post-Mortem with Researchers

“…Our study is accompanied by general limitations, some of which have been mentioned in our prior publications. 17,18 For instance, our study sample was derived from ResearchMatch, a platform that uses a meta-consent model to directly reach and engage a population that is likely inclined to engage in data sharing for research. Future work should explore the validity of our key findings among other representative samples of the US population.…”

“…The survey was developed, validated, and distributed in April 2021 and as described in detail in our prior work. 17,18 The survey was made available to participants, who agreed to be contacted, using online Qualtrics software. Survey participants aged 18 years and older were identified and contacted online using the ResearchMatch online platform, a “disease-neutral, Web-based recruitment registry to help match individuals who wish to participate in clinical research studies with researchers actively searching for volunteers throughout the US.”…”

“…Overall participant characteristics were as described in our prior work. 17,18 Among 470 participants who initiated the survey, 402 completed and submitted the survey (86% completion rate). An overall majority of the of the survey participants were over the age of 21 (99%); held either some college/associates/trade school, a bachelors' degree, or masters' degree (87%); used online medical websites for 7 years or more (56%); and reported an annual frequency of getting ill of six occurrences or less (94%).…”

Advancing regulatory science through real-world data and real-world evidence

“…Policy considerations for RWD/RWE [24,25] Several policy considerations arise in the context of collecting, sharing, and utilizing RWD. While a range of policies and processes have been adopted to help ensure informed consent, data privacy, and the ethical use of individuals' data, this remains a challenging issue given the evolving nature of the collection and utility of RWD, and potential changing and diverse perspectives on privacy.…”

“…While a range of policies and processes have been adopted to help ensure informed consent, data privacy, and the ethical use of individuals’ data, this remains a challenging issue given the evolving nature of the collection and utility of RWD, and potential changing and diverse perspectives on privacy. To provide additional insight on this topic, Hendricks-Sturrup and Lu explore perspectives related to privacy and willingness to share RWD [ 24 ]. While participants were generally supportive of sharing prescription history and other types of RWD, there were concerns about sharing other sources of RWD and the potential for use of RWD by third parties without specific consent.…”