Maintaining confidentiality in prospective studies: anonymous repeated measurements via email (ARME) procedure

Carli, Vladimir; Hadlaczky, Gergö; Wasserman, Camilla; Stingelin-Giles, Nicola; Reiter-Theil, Stella; Wasserman, Danuta

doi:10.1136/jme.2011.044552

Cited by 8 publications

(5 citation statements)

References 16 publications

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“…The group of experts invited to participate in the Delphi study included international researchers (principal investigators and researchers) involved in the European FP7 Project SEYLE [ 28 , 29 ]. SEYLE is used as paradigm project to illustrate ethical questions arising in the preparation, performance and analysis of MHR with adolescents that touches sensitive topics.…”

Section: Methodsmentioning

confidence: 99%

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study

Hiriscau

Stingelin-Giles

Wasserman

et al. 2016

IJERPH

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Research with minors, especially for preventive purposes, e.g., suicide prevention, investigating risk or self-destructive behaviors such as deviance, drug abuse, or suicidal behavior, is ethically sensitive. We present a Delphi study exploring the ethical implications of the needs formulated by researchers in an international pre-conference who would benefit from ethics support and guidance in conducting Mental Health Research with minors. The resulting List of Ethical Issues (LEI) was submitted to a 2-rounds Delphi process via the Internet, including 34 multidisciplinary experts. In the first round, the experts reviewed the LEI and completed a questionnaire. Results from this round were analyzed and grouped in nine categories comprising 40 items. In the second round, the experts had to agree/disagree with the needs expressed in the LEI leading to a final list of 25 ethical issues considered relevant for Mental Health Research with minors such as: confidentiality of the sensitive data, competence for consenting alone and risk of harm and stigma related to the methodology used in research. It was shown that studies like SEYLE (Saving and Empowering Young Lives in Europe) trigger among researchers wishes to obtain specific recommendations helping to comply with standards for good practice in conducting research with minors.

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Section: Methodsmentioning

confidence: 99%

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study

Hiriscau

Stingelin-Giles

Wasserman

et al. 2016

IJERPH

Self Cite

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“…2 As trustworthy test–retest reliability indexes should be, ideally, separated by at least a three-month gap ( P. Kline, 2013 ), we intend to implement a prospective design with two survey administration points after the first one (about 30 and 90 days after first administration). To ensure participant anonymity and confidentiality, we will follow the Anonymous Repeated Measurements via Email (ARME) procedure developed by Carli et al (2012) . The ARME is a 7-step procedure that may be used in online prospective survey designs, outlined with a hypothetical participant below:…”

Section: Methodsmentioning

confidence: 99%

Development of a self-report measure to assess sleep satisfaction: Protocol for the Suffolk Sleep Index (SuSI)

Protogerou

Gladwell²,

Martin³

2022

Front. Psychol.

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Good sleep is essential for health but there is no consensus on how to define and measure people’s understanding of good sleep. To date, people’s perceptions of a good night’s sleep have been, almost exclusively, conceptualized under the lens of sleep quality, which refers to objective characteristics of good sleep, such as such as ease and time needed to fall asleep, hours of sleep, and physical symptoms during sleep and upon awakening. A related, yet different construct, sleep satisfaction, refers to perceived positive affect about one’s sleep experience and has, to date, received little attention. This research focuses on sleep satisfaction, rather than sleep quality, and aims to develop a self-report measure to assess sleep satisfaction in an English adult population. As the measure will be developed in Suffolk, England, and its primary intended users are Suffolk community members, it is labelled the Suffolk Sleep Index (SuSI). The SuSI will draw from principles of community-based participatory research, following a seven-phase developmental process comprising literature review, interviews with Suffolk community members, synthesis of literature review and interview findings, pre-testing, pilot-testing, scale evaluation, and refinement. The present research will also investigate indices related to sleep satisfaction, including the community’s general health status, lifestyle factors and socio-economic status. The research will add to the limited, yet emerging body of research on perceived sleep satisfaction and its measurement. To our knowledge, a valid and reliable sleep satisfaction self-report measure has not been developed in the United Kingdom previously.

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“…However, certified EHRs cannot detect, and, therefore, cannot prevent, improper disclosures. Certified EHRs cannot recognize emerging and often conflicting local, state, and federal privacy policies that apply to particular patients or determine and enforce shifting patient privacy preferences that increasingly govern exchange of PII and PHI in public policies (e.g., Carli et al, 2011).…”

Section: The Patient Privacy Preference Problemmentioning

confidence: 99%

Strategic Value of an Unbound, Interoperable PHR Platform for Rights–Managed Care Coordination

Blechman¹,

Raich²,

Raghupathi³

et al. 2012

CAIS

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Health care reform requires an information-system paradigm shift. We present an innovative implementation involving an unbound, interoperable PHR platform that enforces patient permissions while exchanging structured data via Web services with certified EHRs. We draw on a strategic health information technology framework and a disruptive-innovation argument for the underlying conceptual basis. We describe how the platform's three-tier architecture supports rights-managed care coordination. Finally, we discuss future observational and experimental research on the platform's cost-effectiveness.

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Maintaining confidentiality in prospective studies: anonymous repeated measurements via email (ARME) procedure

Cited by 8 publications

References 16 publications

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study

Development of a self-report measure to assess sleep satisfaction: Protocol for the Suffolk Sleep Index (SuSI)

Strategic Value of an Unbound, Interoperable PHR Platform for Rights–Managed Care Coordination

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