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  • Ovid Technologies (Wolters Kluwer Health)  (2)
  • Sugarman, Jeremy  (2)
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  • Ovid Technologies (Wolters Kluwer Health)  (2)
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  • 1
    Online Resource
    Online Resource
    Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices
    Ovid Technologies (Wolters Kluwer Health) ; 2017
    In:  Medical Care Vol. 55, No. 11 ( 2017-11), p. 970-978
    Details
    In: Medical Care, Ovid Technologies (Wolters Kluwer Health), Vol. 55, No. 11 ( 2017-11), p. 970-978
    Abstract: For pragmatic clinical research comparing commonly used treatments, questions exist about if and how to notify participants about it and secure their authorization for participation. Objective: To determine how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies. Research Design: In an online survey using a between-subjects experimental design, respondents read and responded to 1 of 24 hypothetical research scenarios reflecting different types of studies and approaches to notification and authorization (eg, general notification, oral consent, written consent). Subjects: English-speaking US adults 18 years and older. Measures: Willingness to participate in the hypothetical study, acceptability of the notification and authorization approach, understanding of the study, perceptions of benefit/harm, trust, and perception of amount of study information received. Results: Willingness to participate did not differ by notification and authorization approach. Some (21%–36%) of the patients randomized to general notification with an explicit opt-out provision were not aware they would be enrolled by default. Acceptability was greatest for and similar among notification and authorization approaches that actively engaged the patient (eg, oral or written consent) and lower for approaches with less engagement (eg, general notification). Problems of understanding were found among 20%–55% of respondents, depending on the particular scenario. Most respondents (77%–94%) felt that participation in the hypothetical study posed no risks of harm to their health or privacy. Conclusions: Current attitudes about notification and authorization approaches and difficulties understanding pragmatic clinical research pose significant challenges for pragmatic research. Data from this study provide a starting point to developing solutions to these surprisingly complex issues.
    Type of Medium: Online Resource
    ISSN: 0025-7079
    URL: Article
    DOI: 10.1097/MLR.0000000000000762
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2017
    detail.hit.zdb_id: 2045939-7
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    Online Resource
  • 2
    Online Resource
    Online Resource
    Brief Report: Challenges in Obtaining the Informed Perspectives of Stakeholders Regarding HIV Molecular Epidemiology
    Ovid Technologies (Wolters Kluwer Health) ; 2023
    In:  JAIDS Journal of Acquired Immune Deficiency Syndromes Vol. 93, No. 2 ( 2023-06-1), p. 87-91
    Details
    In: JAIDS Journal of Acquired Immune Deficiency Syndromes, Ovid Technologies (Wolters Kluwer Health), Vol. 93, No. 2 ( 2023-06-1), p. 87-91
    Abstract: HIV molecular epidemiology (HIV-ME) is now being used in a variety of ways, including molecular HIV surveillance to help identify and respond to emerging HIV transmission clusters as specified in the Ending the HIV Epidemic in the U.S. initiative. However, HIV-ME in general, and its use for cluster detection and response, in particular, raises significant ethical and social concerns, which have spurred vigorous debates. Nevertheless, there is a paucity of information regarding how these potential benefits and concerns are perceived among people living with HIV and people without HIV at an increased risk. Setting: Virtual engagement with US participants. Methods: We rigorously developed a brief informational video about HIV-ME and conducted a series of in-depth interviews with people living with HIV and people without HIV at an increased risk. Results: Through extensive stakeholder engagement during the video development process and subsequent in-depth interviews (N = 24), several preliminary findings surfaced. In contrast to the high level of concern raised by some critics of HIV-ME, our data appear to show broad support for it. In addition, we observed conflation of perspectives about HIV-ME with concerns about HIV public health surveillance more generally. Conclusion: Our experiences reveal substantial communication challenges related to the nature of HIV-ME that need to be overcome to ensure that it is properly understood, which is necessary for meaningfully engaging stakeholders in discussions about its use. Moreover, ongoing, responsive, engagement efforts are critical. Additional systematic data are needed to help inform policy making and practice regarding HIV-ME.
    Type of Medium: Online Resource
    ISSN: 1525-4135
    URL: Article
    DOI: 10.1097/QAI.0000000000003179
    RVK:
    XA 10000
    RVK:
    XA 51942
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2023
    detail.hit.zdb_id: 2038673-4
    Location Call Number Limitation Availability
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    Online Resource
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