Abstract:
BACKGROUND:Research using genomic data opens up new insights into health and disease. Being able to use the data in association with health and administrative record data held in safe havens can multiply the benefits. However, there is much discussion about the use of genomic data with perceptions of particular challenges in doing so safely and effectively. OBJECTIVE:This study aimed to work toward a risk-utility data governance framework for research using genomic and phenotypic data in an anonymized form for research in safe havens. METHODS:We carried out a multifaceted review drawing upon data governance arrangements in published research, case studies of organizations working with genomic and phenotypic data, public views and expectations, and example studies using genomic and phenotypic data in combination. The findings were contextualized against a backdrop of legislative and regulatory requirements and used to create recommendations. RESULTS:We proposed recommendations toward a risk-utility model with a flexible suite of controls to safeguard privacy and retain data utility for research. These were presented as overarching principles aligned to the core elements in the data sharing framework produced by the Global Alliance for Genomics and Health and as practical control measures distilled from published literature and case studies of operational safe havens to be applied as required at a project-specific level. CONCLUSIONS:The recommendations presented can be used to contribute toward a proportionate data governance framework to promote the safe, socially acceptable use of genomic and phenotypic data in safe havens. They do not purport to eradicate risk but propose case-by-case assessment with transparency and accountability. If the risks are adequately understood and mitigated, there should be no reason that linked genomic and phenotypic data should not be used in an anonymized form for research in safe havens.
journal_name
J Med Internet Resjournal_title
Journal of medical Internet researchauthors
Jones K,Daniels H,Heys S,Lacey A,Ford DVdoi
10.2196/16346subject
Has Abstractpub_date
2020-05-15 00:00:00pages
e16346issue
5eissn
1439-4456issn
1438-8871pii
v22i5e16346journal_volume
22pub_type
杂志文章,评审abstract:BACKGROUND:Self-management plays an important role in maintaining good control of diabetes mellitus, and mobile phone interventions have been shown to improve such self-management. The Health Promotion Board of Singapore has created a caloric-monitoring mobile health app, the "interactive Diet and Activity Tracker" (iD...
journal_title:Journal of medical Internet research
pub_type: 临床试验,杂志文章
doi:10.2196/jmir.3938
更新日期:2015-02-03 00:00:00
abstract:BACKGROUND:In many countries, there has been substantial progress in establishing the electronic transmission of patients' health information between health care providers, but little is known about how best to engage patients in the process. OBJECTIVE:We explored patients' views about sharing of electronic health inf...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.1164
更新日期:2009-08-06 00:00:00
abstract:BACKGROUND:Effectiveness of and engagement with website-delivered physical activity interventions is moderate at best. Increased exposure to Internet interventions is reported to increase their effectiveness; however, there is a lack of knowledge about which specific intervention elements are able to maintain website e...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.1792
更新日期:2012-01-11 00:00:00
abstract:BACKGROUND:An increasing number of doctor reviews are being generated by patients on the internet. These reviews address a diverse set of topics (features), including wait time, office staff, doctor's skills, and bedside manners. Most previous work on automatic analysis of Web-based customer reviews assumes that (1) pr...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/11141
更新日期:2018-11-12 00:00:00
abstract:BACKGROUND:Effective lifestyle interventions targeting high-risk adults that are both practical for use in ambulatory care settings and scalable at a population management level are needed. OBJECTIVE:Our aim was to examine the potential effectiveness, feasibility, and acceptability of delivering an evidence-based Elec...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.5143
更新日期:2016-05-27 00:00:00
abstract::[This corrects the article DOI: 10.2196/17595.]. ...
journal_title:Journal of medical Internet research
pub_type: 已发布勘误
doi:10.2196/25511
更新日期:2020-11-09 00:00:00
abstract:BACKGROUND:Cancellations and rescheduling of doctor's appointments are common. An automated rescheduling system has the potential to facilitate the rescheduling process so that newly opened slots are promptly filled by patients who need and can take the slot. Building on an existing online patient portal, a large healt...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/16451
更新日期:2020-06-10 00:00:00
abstract:BACKGROUND:In public health surveillance, measuring how information enters and spreads through online communities may help us understand geographical variation in decision making associated with poor health outcomes. OBJECTIVE:Our aim was to evaluate the use of community structure and topic modeling methods as a proce...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.6045
更新日期:2016-08-29 00:00:00
abstract:BACKGROUND:Enormous amounts of data are recorded routinely in health care as part of the care process, primarily for managing individual patient care. There are significant opportunities to use these data for other purposes, many of which would contribute to establishing a learning health system. This is particularly t...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.9134
更新日期:2018-05-29 00:00:00
abstract:BACKGROUND:Internet technologies can create advanced and rich web-based apps that allow radiologists to easily access teleradiology systems and remotely view medical images. However, each technology has its own drawbacks. It is difficult to balance the advantages and disadvantages of these internet technologies and ide...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/16224
更新日期:2020-09-25 00:00:00
abstract:BACKGROUND:The use of eHealth has increased tremendously in recent years. eHealth is generally considered to have a positive effect on health care quality and to be a promising alternative to face-to-face health care contacts. Surprisingly little is known about possible adverse effects of eHealth apps. OBJECTIVE:We co...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,评审
doi:10.2196/10736
更新日期:2019-03-01 00:00:00
abstract:BACKGROUND:We describe our experiences with identifying and recruiting Ontario parents through the Internet, primarily, as well as other modes, for participation in focus groups about adding the influenza vaccine to school-based immunization programs. OBJECTIVE:Our objectives were to assess participation rates with an...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.2829
更新日期:2013-11-14 00:00:00
abstract:BACKGROUND:To improve working conditions and prevent illness and deaths related to overwork, the Taiwanese government in 2015, 2016, and 2018 amended regulations regarding working time, overtime, shifts, and rest days. Such policy changes may lead to a rising public awareness of overwork-related issues, which may in tu...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/18181
更新日期:2020-06-26 00:00:00
abstract:BACKGROUND:Since December 2019, an outbreak of the coronavirus disease (COVID-19) caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has spread rapidly in Wuhan and worldwide. However, previous studies on pregnant patients were limited. OBJECTIVE:The aim of this study is to evaluate the clinical ch...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/19642
更新日期:2020-08-24 00:00:00
abstract:BACKGROUND:The increasing incidence of inflammatory bowel disease (IBD) has imposed heavy financial burdens for Chinese patients; however, data about their financial status and access to health care are still lacking. This information is important for informing patients with IBD about disease treatment budgets and heal...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/20629
更新日期:2021-01-05 00:00:00
abstract:BACKGROUND:Approximately 80% of internet users access health information online and patients with chronic illnesses especially rely on internet-based resources. YouTube ranks second among the most accessed websites worldwide and hosts an increasing number of videos with medical information. However, their quality is so...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/11935
更新日期:2019-01-16 00:00:00
abstract:BACKGROUND:Although vaccination rates are above the threshold for herd immunity in South Korea, a growing number of parents have expressed concerns about the safety of vaccines. It is important to understand these concerns so that we can maintain high vaccination rates. OBJECTIVE:The aim of this study was to develop a...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/13456
更新日期:2019-06-07 00:00:00
abstract:BACKGROUND:Blended group therapy (bGT) has been investigated a several times for anxiety and depression, but information on patients' adherence to and therapists' perception of the novel format is nonexistent. Furthermore, many studies investigated mainly female and highly educated populations, limiting the validity of...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/11860
更新日期:2019-04-28 00:00:00
abstract:BACKGROUND:Crowdsourcing contests (also called innovation challenges, innovation contests, and inducement prize contests) can be used to solicit multisectoral feedback on health programs and design public health campaigns. They consist of organizing a steering committee, soliciting contributions, engaging the community...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,评审
doi:10.2196/jmir.8226
更新日期:2018-03-09 00:00:00
abstract:BACKGROUND:The objective structured clinical examination (OSCE) is a test used throughout Spain to evaluate the clinical competencies, decision making, problem solving, and other skills of sixth-year medical students. OBJECTIVE:The main goal of this study is to explore the possible applications and utility of portable...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/17719
更新日期:2020-08-21 00:00:00
abstract:BACKGROUND:An understanding of the factors that predict retention and website use are critical to the development of effective Web-based weight loss interventions. However, poor retention (dropout attrition) and website utilization (nonusage attrition) are major inhibitors to the effectiveness of Web-based programs. O...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
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更新日期:2010-12-14 00:00:00
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journal_title:Journal of medical Internet research
pub_type: 杂志文章,评审
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更新日期:2016-03-03 00:00:00
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journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.9293
更新日期:2018-04-23 00:00:00
abstract:BACKGROUND:Social network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited. OBJECTIVE:This study aimed to characterize the purpose, use, and creators of Facebook gr...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
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更新日期:2011-02-04 00:00:00
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journal_title:Journal of medical Internet research
pub_type: 杂志文章,评审
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更新日期:2014-09-16 00:00:00
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journal_title:Journal of medical Internet research
pub_type: 杂志文章
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更新日期:2019-06-19 00:00:00
abstract:BACKGROUND:Conversational assistants, such as Siri, Alexa, and Google Assistant, are ubiquitous and are beginning to be used as portals for medical services. However, the potential safety issues of using conversational assistants for medical information by patients and consumers are not understood. OBJECTIVE:To determ...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/11510
更新日期:2018-09-04 00:00:00
abstract:BACKGROUND:Dietary intake assessment with diet records (DR) is a standard research and practice tool in nutrition. Manual entry and analysis of DR is time-consuming and expensive. New electronic tools for diet entry by clients and research participants may reduce the cost and effort of nutrient intake estimation. OBJE...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.3744
更新日期:2015-01-20 00:00:00
abstract:BACKGROUND:Relatively little is known about the extent to which young adults use the Internet as a health information resource and whether there are factors that distinguish between those who do and do not go online for health information. OBJECTIVE:The aim was to identify the sociodemographic, physical, mental, and r...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
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更新日期:2015-05-18 00:00:00
abstract:BACKGROUND:Maintaining a healthy weight can reduce the risk of developing many diseases, including type 2 diabetes, hypertension, and certain types of cancers. Online social media platforms are popular among people seeking social support regarding weight loss and sharing their weight loss experiences, which provides op...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/13745
更新日期:2020-06-08 00:00:00