Background Participants in health research studies typically express interest in receiving results from the studies in which they participate. However, participants’ preferences and experiences related to receiving results are not well understood. In general, existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. Methods The present study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate results, their satisfaction with results, and when and how they would like to receive research results from future studies. 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5,207 registrants who requested full information about the study, 3,381 respondents completed the survey. Results Approximately 33% of respondents with previous health research participation reported receiving results. Approximately half of respondents with previous research participation reported no opportunity to request results. However, almost all respondents said researchers should always or sometimes offer results to participants. Respondents expressed particular interest in results related to their (or a loved one's) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for results were email and website postings. The least desirable dissemination methods for results included Twitter, conference calls, and text messages. Across all results, we compare the responses of respondents with and without previous research participation experience, and those who have worked in research organizations vs. those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results information included in the survey. Conclusions We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results.

Objective Although shared decision-making requires clinicians to discuss the patient’s values and preferences, little is known about the extent to which this occurs with surrogates in intensive care units. We sought to assess whether and how clinicians talk with surrogates about incapacitated patients’ preferences and values. Design Prospective, cross-sectional study. Setting Five ICUs of two hospitals. Subjects Fifty-four physicians and 159 surrogates for 71 patients. Interventions We audio-recorded 71 conferences in which clinicians and surrogates discussed life sustaining treatment decisions for an incapacitated patient near the end of life. Two coders independently coded each instance in which clinicians or surrogates discussed the patient’s previously expressed treatment preferences or values. They subcoded for values that are commonly important to patients near the end of life. They also coded treatment recommendations by clinicians that incorporated the patient’s preferences or values. Measurements and Main Results In 30% of conferences, there was no discussion about the patient’s previously expressed preferences or values. In 37%, clinicians and surrogates discussed both the patient’s treatment preferences and values. In the remaining 33%, clinicians and surrogates discussed either the patient’s treatment preferences or values, but not both. In >88% of conferences, there was no conversation about the patient’s values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality. On average, 3.8% (SD 4.3, range 0 – 16%) of words spoken pertained to patient preferences or values. Conclusions In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients’ preferences or values about end-of-life decision-making. In <12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function. Interventions are needed to ensure patients’ values and preferences are elicited and integrated into end-of-life decisions in ICUs.

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