scholarly journals Using Personal Genomic Data within Primary Care: A Bioinformatics Approach to Pharmacogenomics

Genes ◽  
2020 ◽  
Vol 11 (12) ◽  
pp. 1443
Author(s):  
Rick Overkleeft ◽  
Judith Tommel ◽  
Andrea W. M. Evers ◽  
Johan T. den Dunnen ◽  
Marco Roos ◽  
...  
Keyword(s):  
Primary Care ◽  
Bioinformatics Analysis ◽  
Personal Information ◽  
Genomic Data ◽  
Ethical Standards ◽  
Personal Genomic ◽  
Related Data ◽  
Health Related ◽  
The Individual ◽  
High Degree

One application of personalized medicine is the tailoring of medication to the individual, so that the medication will have the highest chance of success. In order to individualize medication, one must have a complete inventory of all current pharmaceutical compounds (a detailed formulary) combined with pharmacogenetic datasets, the genetic makeup of the patient, their (medical) family history and other health-related data. For healthcare professionals to make the best use of this information, it must be visualized in a way that makes the most medically relevant data accessible for their decision-making. Similarly, to enable bioinformatics analysis of these data, it must be prepared and provided through an interface for controlled computational analysis. Due to the high degree of personal information gathered for such initiatives, privacy-sensitive implementation choices and ethical standards are paramount. The Personal Genetic Locker project provides an approach to enable the use of personal genomic data in primary care. In this paper, we provide a description of the Personal Genetic Locker project and show its utility through a use case based on open standards, which is illustrated by the 4MedBox system.

scholarly journals Data safe havens to combine health and genomic data: benefits and challenges

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Kerina H Jones ◽  
Arron S Lacey ◽  
Brian L Perkins ◽  
Mark I Rees
Keyword(s):  
Association Studies ◽  
Genomic Data ◽  
Population Level ◽  
Data Availability ◽  
Genome Wide Association Studies ◽  
Related Data ◽  
Research Areas ◽  
Individual Privacy ◽  
Access Controls ◽  
Health Related

ABSTRACTObjectivesData safe havens can bring together and combine a rich array of anonymised person-based data for research and policy evaluation within a secure setting. To date, the majority of available datasets have been structured micro-data derived from routine health-related records. Possibilities are opening up for the greater reuse of genomic data such as Genome Wide Association studies (GWAS) and Whole Exome/Genome Sequencing (WES or WGS). However, there are considerable challenges to be addressed if the benefits of using these data in combination with health-related data are to be realized safely. ApproachWe explore the benefits and challenges of using genomic datasets with health-related data, and using the Secure Anonymised Information Linkage (SAIL) system as a case study, the implications and way forward for Data Safe Havens in seeking to incorporate genomic data for use with health-related data. ResultsThe benefits of using GWAS, WES and WGS data in conjunction with health-related data include the potential to explore genetics at a population level and open up novel research areas. These include the ability to increasingly stratify and personalize how medical indications are detected and treated through precision medicine by understanding rare conditions and adding socioeconomic and environmental context to genomic data. Among the challenges are: data availability, computing capacity, technical solutions, legal and regulatory frameworks, public perceptions, individual privacy and organizational risk. Many of the challenges within these areas are common to person-based data in general, and often Data Safe Havens have been designed to address these. But there are also aspects of these challenges, and other challenges, specific to genomic data. These include issues due to the unknown clinical significance of genomic information now or in the future, with corresponding risks for privacy and impact on individuals. ConclusionGenomic data sets contain vast amounts of valuable information, some of which is currently undefined, but which may have direct bearing on individual health at some point. The use of these data in combination with health-related data has the potential to bring great benefits, better clinical trial stratification, epidemiology project design and clinical improvements. It is, therefore, essential that such data are surrounded by a properly-designed, robust governance framework including technical and procedural access controls that enable the data to be used safely.

scholarly journals Systematic Predictive Analysis of Personalized Life Expectancy Using Smart Devices

Technologies ◽  
2018 ◽  
Vol 6 (3) ◽  
pp. 74 ◽  
Author(s):  
James Kang ◽  
Sasan Adibi
Keyword(s):  
Life Expectancy ◽  
Smart Devices ◽  
The Novel ◽  
Sleep Monitoring ◽  
Related Data ◽  
Health Related ◽  
Fitness Tracking ◽  
The Individual ◽  
Calorie Expenditure ◽  
The Internet Of Things

With the emergence of technologies such as electronic health and mobile health (eHealth/mHealth), cloud computing, big data, and the Internet of Things (IoT), health related data are increasing and many applications such as smartphone apps and wearable devices that provide wellness and fitness tracking are entering the market. Some apps provide health related data such as sleep monitoring, heart rate measuring, and calorie expenditure collected and processed by the devices and servers in the cloud. These requirements can be extended to provide a personalized life expectancy (PLE) for the purpose of wellbeing and encouraging lifestyle improvement. No existing works provide this PLE information that is developed and customized for the individual. This article is based on the concurrent models and methodologies to calculate and predict life expectancy (LE) and proposes an idea of using multi-phased approaches to the solution as the project requires an immense and broad range of work to accomplish. As a result, the current prediction of LE, which was found to be up to a maximum of five years could potentially be extended to a lifetime prediction by utilizing generic health data. In this article, the novel idea of the solution proposing a PLE on an individual basis, which can be extended to lifetime is presented in addition to the existing works.

scholarly journals Conditional Support: Focus Group Participants’ Views on Researchers’ Access and Use of Personal Health Information

2020 ◽  
Author(s):  
Jennifer Blair McCormick ◽  
Margaret A Hopkins
Keyword(s):  
Focus Group ◽  
Personal Information ◽  
Medical Center ◽  
Academic Medical Center ◽  
Personal Health Information ◽  
Advisory Council ◽  
Related Data ◽  
Academic Medical ◽  
Important Health ◽  
Health Related

Abstract Background: Researchers are increasingly collecting large amounts of de-identified data about individuals to address important health-related challenges and answer fundamental questions. Current US federal regulations permit researchers to use already collected and stored de-identified health-related data from a variety of sources without seeking consent from patients. While multiple studies have explored patients’ views on the sharing of their health-related data, few have investigated their views on the policies and processes institutions have in place or should have in place for accessing, using, and sharing of data.Methods: We conducted 5 with individuals who live within a 20-mile radius of the local academic medical center. In addition, in order to increase the number of participants younger than 45 years of age, we held a focus group with undergraduates at a local university. Transcripts were analyzed using content analysis. The codebook was revised and refined, codes clarified, and disagreements resolved through discussion.Results: A total of 37 individuals participated, ages 18-76. Most participants were not surprised that researchers accessed and used de-identified personal information for research. For participants, transparency was key. They wanted to know when their data were accessed, for what purpose, and by whom. However, for some participants, just knowing their data had been accessed and used was not enough. Rather they wanted to have some control over the use of their data valuing the chance to opt-out. That said, wanting some control didn’t conflict with participants’ support of the use of their data for research. Most participants trusted their local academic medical institution, but were less trusting of other academic medical institutions and commercial entities. Finally, participants supported establishment of an advisory council or group with responsibility for deciding what data were used, who was accessing those data, and whether data could be shared. Conclusions: The trust people have in their local institutions should be considered fragile, and institutions should not take that trust for granted. How institutions choose to govern patients’ data and what voices they include in decisions about use and access are critical to maintaining the trust of the public.

Health Code of Conduct: A Blockchain Model for Health Metrics and Sharing (Preprint)

2021 ◽  
Author(s):  
Reza Assadi ◽  
Ghazal GHasemi
Keyword(s):  
Data Storage ◽  
Healthcare Professionals ◽  
Data Transfer ◽  
Personal Information ◽  
Health Data ◽  
Security And Privacy ◽  
Global Network ◽  
Health Records ◽  
Related Data ◽  
Health Related

BACKGROUND Health is the most valuable property of all humans, and for long, scientists have had to cope with a tremendous amount of health-related data globally. Recording of health data has always faced challenges concerning privacy, accuracy, and interoperability. So in this study, we intended to summarize health records to a minimal and abridged string that can be easily reused and shared among health systems. For this purpose, we attempted to use various coding systems and combine them with disability codes defined in Global Burden of Disease (GBD) studies to reach a unique method for presenting health records. However, this type of data is prone to disclosing personal information and should be secured safely. Today, one of the safest methods for storing and sharing data is a blockchain network that makes data transactions safe and secure. OBJECTIVE Ultimately, we have envisaged a global network of interconnected health data communicating through approved protocols, namely the Internet of Health data (IoHd). METHODS In other words, we propose a decentralized, blockchain-based network where EHRs (Electronic Health Records) are stored in the form of a hashed health code, as explained earlier. The distributed system connects the health-related data among the trusted nodes, leading to the emergence of IoH. RESULTS This data would be hashed health codes stored on the blockchain, so all healthcare professionals and health-related corporations/institutions/companies may access this network using their login information. The network consists of three sub-networks, the private (for health wallets), the permissioned (for care wallets), and the or pseudonymous (for data wallets). CONCLUSIONS Considering blockchain technology's high security and privacy, it would be possible to safely and widely provide relevant health information for caregivers, healthcare professionals, research centers, big data studies, and artificial intelligence platforms to offer better access, data storage, care provision, data transfer, and surveillance.

2015 Geneva Declaration on Person-Centered Primary Health Care

2015 ◽  
Vol 5 (2) ◽  
pp. 51-52
Author(s):  
International College of Person Centered Medicine
Keyword(s):  
Primary Care ◽  
Healthcare Needs ◽  
Primary Health ◽  
Healthcare Experiences ◽  
Health Related ◽  
Source Of Care ◽  
Time And Being ◽  
The Individual ◽  
Relationship Of ◽  
Over Time

 Person-centered healthcare aims to provide healthcare experiences and services that attain the health-related goals of the individual being served. Person-centeredness is an attitude, philosophy and approach that truly puts the person in the center of the healthcare system. Person-centeredness starts with a relationship with a healthcare professional that becomes the person’s usual source of care. From this relationship grows trust. From trust grows the ability to engage, educate, and empower people in their healthcare. This relationship of trust is based on continuity of care over time and being present for the person’s healthcare needs. This continuous, comprehensive, and caring approach of primary care is the formula in which the person becomes empowered and engaged in their health.

scholarly journals Exploring public concerns for sharing and governance of personal health information: a focus group study

JAMIA Open ◽  
2021 ◽  
Vol 4 (4) ◽  
Author(s):  
Jennifer B McCormick ◽  
Margaret A Hopkins
Keyword(s):  
Focus Group ◽  
Personal Information ◽  
Medical Center ◽  
Academic Medical Center ◽  
Personal Health Information ◽  
Advisory Council ◽  
Focus Group Study ◽  
Related Data ◽  
Important Health ◽  
Health Related

Abstract Objective Researchers are increasingly collecting large amounts of deidentified data about individuals to address important health-related challenges and answer fundamental questions. Current US federal regulations permit researchers to use already collected and stored deidentified health-related data from a variety of sources without seeking consent from patients. The objective of this study was to investigate public views on the policies and processes institutions have in place for accessing, using, and sharing of data. Materials and Methods We conducted 5 focus groups with individuals living within a 20-mile radius of the local academic medical center. We also held a focus group with undergraduates at a local university. Results A total of 37 individuals participated, ages 18–76. Most participants were not surprised that researchers accessed and used deidentified personal information for research, and were supportive of this practice. Transparency was important. Participants wanted to know when their data were accessed, for what purpose, and by whom. Some wanted to have some control over the use of their data valuing the chance to opt-out. Finally, participants supported establishment of an advisory council or group with responsibility for deciding what data were used, who was accessing those data, and whether data could be shared. Discussion and Conclusions The trust people have in their local institutions should be considered fragile, and institutions should not take that trust for granted. How institutions choose to govern patients’ data and what voices are included in decisions about use and access are critical to maintaining the trust of the public.

Semiology of the Pain Syndrome - Identifying the Ideal Methods of Locoregional Anesthesia Based on Their Rationale and Features

2017 ◽  
Vol 68 (10) ◽  
pp. 2373-2377
Author(s):  
Mihaela Monica Scutariu ◽  
Vlad Danila ◽  
Corina Ciupilan ◽  
Oana Elena Ciurcanu
Keyword(s):  
Maxillofacial Surgery ◽  
Essential Element ◽  
Pain Syndrome ◽  
Oral And Maxillofacial Surgery ◽  
Structuring Element ◽  
Technical Accuracy ◽  
Locoregional Anesthesia ◽  
Special Approach ◽  
The Individual ◽  
High Degree

Anesthesia and the degree of control over the perception of pain depends on the personality of the individual, the socio-economic conditions, potential previous painful experiences and, last but not least, on fatigue and fear of the dentist. The perception of pain in patients is closely connected to their mental state. Pain is defined as a sensation of discomfort, with wide variations, both in quality and intensity, for different people in seemingly identical conditions; an unpleasant sensitive and emotional phenomena connected to the threat of a wound or caused in the tissues or described in the terms of this disease. The essential element of any type of anesthesia is analgesia, an effect which in some cases cannot be achived, due to the patient�s particularities or the physician�s lack of experience in anesthesia. Locoregional anesthesia (LRA) represents the blocking of the nociceptive sensitive and sympathetic autonomic afferents as well as that of motor efferents at the level of peripheral nerves� axons, by means of local anesthetic. To achieve the set purpose, we carried out a study on a representative human sample comprised of 10.123 patients treated in the Oral and Maxillofacial Surgery Clinic (Ambulatory) from the County Clinic Emergency Hospital St. Spiridon Iasi, between 01.01.2015-31.12.2016. The reason for the exclusion of certain categories of patients in the reseach was: the patients with a special conditions background require individual pre-anesthesia schemes, personalised for the nature of the pre-existing general condition, which must be further approved by the attending specialist physician : cardiologist, internist, diabetologist; children under 18 years old, with a high degree of anxiety; a high precentage of elderly patients, over 60 years old, possess a combination of general issues, thus requiring a special approach. The thoroughness lying at the core of the anesthetic practice, most especially the safegurading of a technical accuracy in the performance of anesthesia [12,], instead of improvisations, the lack of anatomical and stomatological training in general and the resulting inefficiency as such, is the underlying in-depth structuring element of this paper.

Novel Visualization of Large Health Related Data Sets

2015 ◽  
Author(s):  
William E. Hammond ◽  
Vivian L. West ◽  
David Borland ◽  
Igor Akushevich ◽  
Eugenia M. Heinz
Keyword(s):  
Data Sets ◽  
Related Data ◽  
Health Related

scholarly journals Territories of state-led aquaculture risk management: Thailand’s Plang Yai program

2020 ◽  
pp. 239965442096524
Author(s):  
Mariska JM Bottema ◽  
Simon R Bush ◽  
Peter Oosterveer
Keyword(s):  
Risk Management ◽  
Policy Instruments ◽  
Spatially Explicit ◽  
Financial Risks ◽  
Shared Resources ◽  
Globalizing World ◽  
Farmer Behavior ◽  
Key Policy ◽  
The Individual ◽  
High Degree

The Thai aquaculture sector faces a range of production, market and financial risks that extend beyond the private space of farms to include public spaces and shared resources. The Thai state has attempted to manage these shared risks through its Plang Yai (or ‘Big Area’) agricultural extension program. Using the lens of territorialization, this paper investigates how, through the Plang Yai program, risk management is institutionalized through spatially explicit forms of collaboration amongst farmers and between farmers and (non-)state actors. We focus on how four key policy instruments brought together under Plang Yai delimited multiple territories of risk management over shrimp and tilapia production in Chantaburi and Chonburi provinces. Our findings demonstrate how these policy instruments address risks through dissimilar but overlapping territories that are selectively biased toward facilitating the individual management of production risks, whilst enabling both the individual and collective management of market and financial risks. This raises questions about the suitability of addressing aquaculture risks by controlling farmer behavior through state-led designation of singular, spatially explicit areas. The findings also indicate the multiple roles of the state in territorializing risk management, providing a high degree of flexibility, which is especially valuable in landscapes shared by many users, connected to (global) value chains and facing diverse risks. In doing so we demonstrate that understanding the territorialization of production landscapes in a globalizing world requires a dynamic approach recognizing the multiplicity of territories that emerge in risk management processes.

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