Abstract:
BACKGROUND:Efficiently sharing health data produced during standard care could dramatically accelerate progress in cancer treatments, but various barriers make this difficult. Not sharing these data to ensure patient privacy is at the cost of little to no learning from real-world data produced during cancer care. Furthermore, recent research has demonstrated a willingness of patients with cancer to share their treatment experiences to fuel research, despite potential risks to privacy. OBJECTIVE:The objective of this study was to design, pilot, and release a decentralized, scalable, efficient, economical, and secure strategy for the dissemination of deidentified clinical and genomic data with a focus on late-stage cancer. METHODS:We created and piloted a blockchain-authenticated system to enable secure sharing of deidentified patient data derived from standard of care imaging, genomic testing, and electronic health records (EHRs), called the Cancer Gene Trust (CGT). We prospectively consented and collected data for a pilot cohort (N=18), which we uploaded to the CGT. EHR data were extracted from both a hospital cancer registry and a common data model (CDM) format to identify optimal data extraction and dissemination practices. Specifically, we scored and compared the level of completeness between two EHR data extraction formats against the gold standard source documentation for patients with available data (n=17). RESULTS:Although the total completeness scores were greater for the registry reports than those for the CDM, this difference was not statistically significant. We did find that some specific data fields, such as histology site, were better captured using the registry reports, which can be used to improve the continually adapting CDM. In terms of the overall pilot study, we found that CGT enables rapid integration of real-world data of patients with cancer in a more clinically useful time frame. We also developed an open-source Web application to allow users to seamlessly search, browse, explore, and download CGT data. CONCLUSIONS:Our pilot demonstrates the willingness of patients with cancer to participate in data sharing and how blockchain-enabled structures can maintain relationships between individual data elements while preserving patient privacy, empowering findings by third-party researchers and clinicians. We demonstrate the feasibility of CGT as a framework to share health data trapped in silos to further cancer research. Further studies to optimize data representation, stream, and integrity are required.
journal_name
J Med Internet Resjournal_title
Journal of medical Internet researchauthors
Glicksberg BS,Burns S,Currie R,Griffin A,Wang ZJ,Haussler D,Goldstein T,Collisson Edoi
10.2196/16810subject
Has Abstractpub_date
2020-03-20 00:00:00pages
e16810issue
3eissn
1439-4456issn
1438-8871pii
v22i3e16810journal_volume
22pub_type
杂志文章abstract::Brain-machine interfaces hold promise for the restoration of sensory and motor function and the treatment of neurological disorders, but clinical brain-machine interfaces have not yet been widely adopted, in part, because modest channel counts have limited their potential. In this white paper, we describe Neuralink's ...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/16194
更新日期:2019-10-31 00:00:00
abstract:BACKGROUND:The contents of traditional communication media and new internet social media reflect the interests of society. However, certain barriers and a lack of attention towards mental disorders have been previously observed. OBJECTIVE:The objective of this study is to measure the relevance of influential American ...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.9582
更新日期:2018-05-28 00:00:00
abstract:BACKGROUND:Methylphenidate, a stimulant used to treat attention deficit hyperactivity disorder, has the potential to be used nonmedically, such as for studying and recreation. In an era when many people actively use social networking services, experience with the nonmedical use or side effects of methylphenidate might ...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/16466
更新日期:2020-02-24 00:00:00
abstract:BACKGROUND:The implementation of a personal electronic health record (PHR) is a central objective of digitalization policies in the German health care system. Corresponding legislation was passed with the 2015 Act for Secure Digital Communication and Applications in the Health Sector (eHealth Act). However, compared wi...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/15102
更新日期:2020-01-29 00:00:00
abstract:BACKGROUND:Internet disease management has the promise of improving care in patients with heart failure but evidence supporting its use is limited. We have designed a Heart Failure Internet Communication Tool (HFICT), allowing patients to enter messages for clinicians, as well as their daily symptoms, weight, blood pre...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.7.1.e8
更新日期:2005-03-26 00:00:00
abstract:BACKGROUND:Current practice guidelines emphasize the use of physical activity as the first-line treatment of knee osteoarthritis; however, up to 90% of people with osteoarthritis are inactive. OBJECTIVE:We aimed to assess the efficacy of a technology-enabled counseling intervention for improving physical activity in p...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.8514
更新日期:2018-04-30 00:00:00
abstract:BACKGROUND:The literature indicates that Web-based health information seeking is mostly used for seeking information on well-established diseases. However, only a few studies report health information seeking in the absence of a doctor's visit and in the context of acute symptoms. OBJECTIVE:This survey aimed to estima...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/15148
更新日期:2020-01-10 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:Adolescents present many challenges in providing them effective preventive services and health care. Yet, they are typically the early adopters of new technology (eg, the Internet). This creates important opportunities for engaging youths via eHealth. OBJECTIVE:To describe how adolescents use technology for...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.5.4.e32
更新日期:2003-12-18 00:00:00
abstract:BACKGROUND:The long-term effects of mobile health (mHealth) interventions have not been documented, especially in resource-constrained settings. OBJECTIVE:This study aimed to assess the effects of a 1-year mHealth intervention on blood pressure levels and body weight in low-resource urban settings in Peru, 4 years aft...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/14595
更新日期:2020-04-21 00:00:00
abstract:BACKGROUND:Little is known about the effectiveness of mobile apps in aiding smoking cessation or their validity for automated collection of data on smoking cessation outcomes. OBJECTIVE:We conducted a preliminary evaluation of SF28 (SF28 is the name of the app, short for SmokeFree28)-an app aimed at helping smokers to...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.3479
更新日期:2015-01-16 00:00:00
abstract:BACKGROUND:Patient registries are commonly used to track survival and medical outcomes in large cohorts. However, large-scale collection of health-related quality of life (HRQOL) data is more challenging because such data must be collected directly from patients. Internet-based HRQOL questionnaires are a potential solu...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.1214
更新日期:2010-08-19 00:00:00
abstract:BACKGROUND:Internet technology is transforming the general approach to communication and dissemination of information in the field of healthcare. However, it is also creating problems in terms of finding information, and knowing what credibility to place on the information found. The chaotic nature of the World Wide We...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.2.2.e11
更新日期:2000-04-01 00:00:00
abstract:BACKGROUND:Participants in medical forums often reveal personal health information about themselves in their online postings. To feel comfortable revealing sensitive personal health information, some participants may hide their identity by posting anonymously. They can do this by using fake identities, nicknames, or ps...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.2514
更新日期:2013-10-03 00:00:00
abstract:BACKGROUND:A growing body of evidence supports the potential effectiveness of electronic health (eHealth) interventions in managing chronic pain. However, research on the needs and preferences of patients with chronic pain in relation to eHealth interventions is scarce. Eliciting user input in the development of eHealt...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/13205
更新日期:2019-04-01 00:00:00
abstract::In October 2015, the "Chinese American Physicians E-Hospital" celebrated its "grand opening" online. All physicians affiliated with this E-Hospital are bilingual Chinese American physicians, who provide services ranging from initial teleconsulting to international transfer and treatment in the United States. Such tele...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.5432
更新日期:2016-05-23 00:00:00
abstract:BACKGROUND:There are few studies on the role of technology delivery mode on health intervention outcomes. Furthermore, the opportunity to examine potential mode effects on a program that is theory-based and integrates principles of communication and decision-making science to influence sexual and reproductive health ou...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/10398
更新日期:2018-08-29 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:There is a growing body of evidence regarding eHealth interventions that target substance use disorders. Development and funding decisions in this area have been challenging, due to a lack of understanding of what parts of an intervention work in which context. OBJECTIVE:We conducted a realist review of the...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,评审
doi:10.2196/20557
更新日期:2021-01-21 00:00:00
abstract::Analogous to checklists of recommendations such as the CONSORT statement (for randomized trials), or the QUORUM statement (for systematic reviews), which are designed to ensure the quality of reports in the medical literature, a checklist of recommendations for authors is being presented by the Journal of Medical Inte...
journal_title:Journal of medical Internet research
pub_type: 社论
doi:10.2196/jmir.6.3.e34
更新日期:2004-09-29 00:00:00
abstract:BACKGROUND:Physical activity promotes health and longevity. Further elaboration of the role of physical activity for human health in epidemiological studies on large samples requires accurate methods that are easy to use, cheap, and possible to repeat. The use of telecommunication technologies such as cell phones is hi...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.1686
更新日期:2011-09-25 00:00:00
abstract:BACKGROUND:Hydroxyurea, chronic blood transfusions, and bone marrow transplantation are efficacious, disease-modifying therapies for sickle cell disease but involve complex risk-benefit trade-offs and decisional dilemma compounded by the lack of comparative studies. A patient decision aid can inform patients about thei...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/14462
更新日期:2019-12-04 00:00:00
abstract:BACKGROUND:Most patients with diabetes mellitus (DM) are followed by primary care physicians, who often lack knowledge or confidence to prescribe insulin properly. This contributes to clinical inertia and poor glycemic control. Effectiveness of traditional continuing medical education (CME) to solve that is limited, so...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.6944
更新日期:2017-03-09 00:00:00
abstract:BACKGROUND:Chronic knee pain, most commonly caused by knee osteoarthritis, is a prevalent condition which in most cases can be effectively treated through conservative, non-surgical care involving exercise therapy, education, psychosocial support, and weight loss. However, most people living with chronic knee pain do n...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
doi:10.2196/jmir.9667
更新日期:2018-04-25 00:00:00
abstract:BACKGROUND:Health literacy research seems to lack a consensus on what aspects to include into literacy in the context of health and on how to operationalize these concepts for measurement purposes. In addition to health literacy, several other concepts, such as electronic health (eHealth) literacy and mental health lit...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/10273
更新日期:2018-12-19 00:00:00
abstract:BACKGROUND:The outbreak of COVID-19 has profoundly influenced people's lifestyles; these impacts have varied across subgroups of people. The pandemic-related impacts on the health outcomes of people with dermatological conditions are unknown. OBJECTIVE:The aim of this paper was to study the association of COVID-19 pan...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/22288
更新日期:2020-09-11 00:00:00
abstract:BACKGROUND:Profound vitamin B12 deficiency is a known cause of disease, but the role of low or intermediate levels of B12 in the development of neuropathy and other neuropsychiatric symptoms, as well as the relationship between eating meat and B12 levels, is unclear. OBJECTIVE:The objective of our study was to investi...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/jmir.8667
更新日期:2018-01-05 00:00:00
abstract:BACKGROUND:Smartphone apps, fitness trackers, and online social networks have shown promise in weight management and physical activity interventions. However, there are knowledge gaps in identifying the most effective and engaging interventions and intervention features preferred by their users. OBJECTIVE:This 6-month...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
doi:10.2196/19991
更新日期:2020-12-08 00:00:00
abstract:BACKGROUND:Active participant monitoring of adverse events following immunization (AEFI) is a recent development to improve the speed and transparency of vaccine safety postmarketing. Vaxtracker, an online tool used to monitor vaccine safety, has successfully demonstrated its usefulness in postmarketing surveillance of...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.2196/14791
更新日期:2019-10-23 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