Background: Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently. However, online research methods may be associated with unique threats to sample validity and data integrity. Limited research has described issues of data quality and authenticity associated with the recruitment of health research participants through social media, and sources of low-quality and fraudulent data in this context are poorly understood. Objective: The goal of the research was to describe and explain threats to sample validity and data integrity following recruitment of health research participants through social media and summarize recommended strategies to mitigate these threats. Our experience designing and implementing a research study using social media recruitment and online data collection serves as a case study. Methods: Using published strategies to preserve data integrity, we recruited participants to complete an online survey through the social media platforms Twitter and Facebook. Participants were to receive $15 upon survey completion. Prior to manually issuing remuneration, we reviewed completed surveys for indicators of fraudulent or low-quality data. Indicators attributable to respondent error were labeled suspicious, while those suggesting misrepresentation were labeled fraudulent. We planned to remove cases with 1 fraudulent indicator or at least 3 suspicious indicators. Results: Within 7 hours of survey activation, we received 271 completed surveys. We classified 94.5% (256/271) of cases as fraudulent and 5.5% (15/271) as suspicious. In total, 86.7% (235/271) provided inconsistent responses to verifiable items and 16.2% (44/271) exhibited evidence of bot automation. Of the fraudulent cases, 53.9% (138/256) provided a duplicate or unusual response to one or more open-ended items and 52.0% (133/256) exhibited evidence of inattention. Conclusions: Research findings from several disciplines suggest studies in which research participants are recruited through social media are susceptible to data quality issues. Opportunistic individuals who use virtual private servers to fraudulently complete research surveys for profit may contribute to low-quality data. Strategies to preserve data integrity following research participant recruitment through social media are limited. Development and testing of novel strategies to prevent and detect fraud is a research priority.

Review from JAMA — Beyond Advance Directives — Importance of Communication Skills at the End of Life — Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.

Objective: To compare prolonged mechanical ventilation decision-makers’ expectations for long-term patient outcomes with prospectively observed outcomes and to characterize important elements of the surrogate-physician interaction surrounding prolonged mechanical ventilation provision. Prolonged mechanical ventilation provision is increasing markedly despite poor patient outcomes. Misunderstanding prognosis in the prolonged mechanical ventilation decision-making process could provide an explanation for this phenomenon. Design: Prospective observational cohort study. Setting: Academic medical center. Patients: A total of 126 patients receiving prolonged mechanical ventilation. Interventions: None. Measurements and Main Results: Participants were interviewed at the time of tracheostomy placement about their expectations for 1-yr patient survival, functional status, and quality of life. These expectations were then compared with observed 1-yr outcomes measured with validated questionnaires. The 1-yr follow-up was 100%, with the exception of patient death or cognitive inability to complete interviews. At 1 yr, only 11 patients (9%) were alive and independent of major functional status limitations. Most surrogates reported high baseline expectations for 1-yr patient survival (n = 117, 93%), functional status (n = 90, 71%), and quality of life (n = 105, 83%). In contrast, fewer physicians described high expectations for survival (n = 54, 43%), functional status (n = 7, 6%), and quality of life (n = 5, 4%). Surrogate-physician pair concordance in expectations was poor (all κ = <0.08), as was their accuracy in outcome prediction (range = 23%–44%). Just 33 surrogates (26%) reported that physicians discussed what to expect for patients’ likely future survival, general health, and caregiving needs. Conclusions: One-year patient outcomes for prolonged mechanical ventilation patients were significantly worse than expected by patients’ surrogates and physicians. Lack of prognostication about outcomes, discordance between surrogates and physicians about potential outcomes, and surrogates’ unreasonably optimistic expectations seem to be potentially modifiable deficiencies in surrogate-physician interactions.

Quality cancer care requires addressing patients' emotions. This trial evaluated the effectiveness of a computerized intervention in improving oncologists' responses to patients' expressions of neg... Background: Quality cancer care requires addressing patients' emotions, which oncologists infrequently do. Multiday courses can teach oncologists skills to handle emotion; however, such workshops a...