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Bringing Code to Data: Do Not Forget Governance

Bringing Code to Data: Do Not Forget Governance

Data stewards adopting a model-to-data approach must also address issues of privacy, confidentiality, security, ownership, research ethics oversight, and sustainability. Concerns about risks to privacy are at the core of resistance to data sharing. Data sharing models involving the distribution of data to researchers rely heavily on deidentification (the process of removing direct identifiers).

Christine Suver, Adrian Thorogood, Megan Doerr, John Wilbanks, Bartha Knoppers

J Med Internet Res 2020;22(7):e18087


Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

The current biomedical research paradigm has been characterized by a shift from intrainstitutional research toward multiple collaborating institutions operating at an interinstitutional, national or international level for multisite research projects; however, despite the apparent breakdown of research barriers, there remain differences between ethical and legal requirements at all jurisdictional levels [1].

James Scheibner, Jean Louis Raisaro, Juan Ramón Troncoso-Pastoriza, Marcello Ienca, Jacques Fellay, Effy Vayena, Jean-Pierre Hubaux

J Med Internet Res 2021;23(2):e25120


Personal Health Information Inference Using Machine Learning on RNA Expression Data from Patients With Cancer: Algorithm Validation Study

Personal Health Information Inference Using Machine Learning on RNA Expression Data from Patients With Cancer: Algorithm Validation Study

Despite increasing research using genomic data, there is a lack of research to determine the appropriate level of data sharing based on the predictability of personal information. In order to protect personal information while sharing genomic data, it is necessary to evaluate all patient information that could be revealed by genomic data only. Since 2000, numerous papers that use machine learning algorithms in genome-wide analyses have been published [11].

Solbi Kweon, Jeong Hoon Lee, Younghee Lee, Yu Rang Park

J Med Internet Res 2020;22(8):e18387


The Healing Hearts Together Randomized Controlled Trial and the COVID-19 Pandemic: A Tutorial for Transitioning From an In-Person to a Web-Based Intervention

The Healing Hearts Together Randomized Controlled Trial and the COVID-19 Pandemic: A Tutorial for Transitioning From an In-Person to a Web-Based Intervention

This tutorial aims to help clinical researchers transition their in-person research programs to a web-based format during the pandemic and beyond. To our knowledge, no literature exists on how to navigate the steps required to transition a randomized controlled trial (RCT), designed for in-person delivery, to an online world. No one has outlined, for example, contacts with sponsors and research ethics boards, recruitment procedures, or informed consent changes.

Kathleen Lalande, Paul S Greenman, Karen Bouchard, Susan M Johnson, Heather Tulloch

J Med Internet Res 2021;23(4):e25502


Assessing Ethoshunt as a Gamification-Based Mobile App in Ethics Education: Pilot Mixed-Methods Study

Assessing Ethoshunt as a Gamification-Based Mobile App in Ethics Education: Pilot Mixed-Methods Study

The participants were students enrolled in a counseling ethics education course at a public university in Malaysia. The students were all first semester undergraduate students who were diverse in terms of age, gender, race, and cultural identity. The participants were chosen based on the research purpose and consideration of the comprehensiveness of the resources available. Ethics education is a cut and dry course. The course is considered complex and covers a large number of topics.

Noor Syamilah Zakaria, M Iqbal Saripan, Neerushah Subarimaniam, Alyani Ismail

JMIR Serious Games 2020;8(3):e18247


Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study

Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study

All participants completed the CITI research ethics training in 7-9 hours—approximately 2.5-4.5 hours longer than the average completion time [16]. As CPS are increasingly involved in research as partners, adaptations may be needed to facilitate the uptake of online research ethics training.

Karen L Fortuna, Skyla R Marceau, Arya Kadakia, Sarah I Pratt, Joy Varney, Robert Walker, Amanda L Myers, Shavon Thompson, Katina Carter, Kaycie Greene, Willie Pringle

JMIR Form Res 2022;6(2):e29073


Efficiency and Quality of Data Collection Among Public Mental Health Surveys Conducted During the COVID-19 Pandemic: Systematic Review

Efficiency and Quality of Data Collection Among Public Mental Health Surveys Conducted During the COVID-19 Pandemic: Systematic Review

We used the Newcastle-Ottawa Scale to evaluate the quality of each research article. The Newcastle-Ottawa Scale includes four criteria for selection bias, with scores ranging between 0 and 5; scores In all, we found 37 relevant mental health surveys of the general public during the COVID-19 pandemic by searching the Pub Med database, as of July 10, 2020. All these public mental health survey studies examined had a cross-sectional study design.

Yu-Hsuan Lin, Chung-Yen Chen, Shiow-Ing Wu

J Med Internet Res 2021;23(2):e25118


The Eastern Mediterranean Public Health Network: A Resource for Improving Public Health in the Eastern Mediterranean Region

The Eastern Mediterranean Public Health Network: A Resource for Improving Public Health in the Eastern Mediterranean Region

Its mission is to prevent and control diseases, conduct and support operational research for priority public health domains, and strengthen public health programs while working jointly with similar institutions associations, networks, and organizations. EMPHNET’s website [6] displays a lot of information on various tools and approaches, activities, success stories, and achievements of the EMPHNET in the EMR.

Mohannad Al Nsour

JMIR Public Health Surveill 2019;5(3):e14992


The Value of Applying Ethical Principles in Telehealth Practices: Systematic Review

The Value of Applying Ethical Principles in Telehealth Practices: Systematic Review

Health service responses to the recent COVID-19 pandemic have further accelerated the use of telehealth globally, increasing the need for research and effective knowledge transfer mechanisms. Evaluations of telehealth programs have focused on the promises of telehealth, such as improved efficacy, efficiency, and clinical outcomes. Less research has focused on the potential perils of telehealth and the potentially negative, harmful, or unethical impacts of this type of service delivery [2].

Amanda Jane Keenan, George Tsourtos, Jennifer Tieman

J Med Internet Res 2021;23(3):e25698


Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health

Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health

Through participating project investigators and researchers, as well as methodological and thematic connections and overlaps, the group will be associated with the International Network on Ethics of Families and the FORTE/VR research program “Addressing Ethical Obstacles to Person Centered Care” at Karolinska Institute, Stockholm, Sweden. Cancer is killing more people in the developing world than HIV/AIDS, tuberculosis, and malaria combined [1-3], and it is a growing concern in Ethiopia [2,4].

Nataliya Berbyuk Lindström, Aynalem Abraha Woldemariam, Abebe Bekele, Christian Munthe, Rune Andersson, Bethlehem Girma Kebede, Barbro Linderholm, Wondemagegnhu Tigeneh

JMIR Res Protoc 2020;9(5):e16493