Modern Privacy
Call for action for stakeholders to ensure privacy in healthcare solutions
Presented during the Modern Privacy Symposium at Bentley University in Boston on June 10th, 2019
Kraaij infrastructures for secure data analytics def brussel 2017Wessel Kraaij
How can we combine vertically partitioned data for data driven health in a secure way. Description of the Holland Health Data Cooperative and the Prana Data project www.pranadata.nl pilot on homomorphic encryption.
Contribution to the DigEnlight workshop https://digitalenlightenment.org/event/workshop-towards-european-ecosystem-health-care-data Oct 25 2017, Brussels.
The document proposes the creation of a patient-owned health data cooperative called Our Health Data Cooperative (OHDC) to build a learning health system. OHDC would allow patients to share their de-identified health information to facilitate research on best practices and treatments. It would give patients access to their health data and research findings. OHDC would generate revenue from subscriptions to access the data and from third-party services like telemedicine that it would offer members. The goal is to improve patient outcomes and lower healthcare costs through a transparent, collaborative system.
The document discusses the complex healthcare ecosystem and the importance of stakeholder management. It notes there are many diverse stakeholders in healthcare, including patients, companies, policymakers, educators, funders, third sector groups, and healthcare providers. Each of these stakeholder groups have differing and sometimes competing interests. Effective stakeholder management requires careful coordination, priority setting, and strategic planning to manage relationships between these various groups. Examples provided include establishing community advisory boards to facilitate two-way dialogue between stakeholders.
The document discusses challenges with information sharing across health and social care systems in the UK, including different data formats, lack of integration, and lack of trust. It describes a project by Symphonic Software to deliver a governance layer for the London Digital Programme, which aims to allow the 7,000 organizations involved in patient care in London to access patient records while meeting data controller agreements and patient consent preferences. The governance layer will provide policy translation, identity management, and automated generation of information sharing policies to improve integrated care.
The document outlines New Zealand's Health Information Strategy (HIS-NZ) which signals increased sharing of personal health information through 12 action zones rather than a single electronic health record. It discusses principles for information sharing including using key health event summaries to support integrated care while maintaining distributed electronic health records. The strategy will be overseen by an independent ministerial committee and emphasizes stakeholder engagement including improving consumer involvement.
Health IT and Public Policy Issues Dr. Rich Hodgemihinpr
The document provides an overview of current public policy issues related to health information technology in the United States. It discusses HIMSS' role in advocating for health IT and outlines their public policy process. Key points include:
- HIMSS advocates for health IT through establishing annual policy principles, priorities, and statements to guide their work.
- The top congressional affairs priorities for 2013 are preserving HITECH EHR incentive funding, advancing patient data matching, and educating Congress on health IT issues.
- Federal legislative and regulatory activity around topics like meaningful use, interoperability, privacy/security, and medical device regulation will impact the health IT field.
Kraaij infrastructures for secure data analytics def brussel 2017Wessel Kraaij
How can we combine vertically partitioned data for data driven health in a secure way. Description of the Holland Health Data Cooperative and the Prana Data project www.pranadata.nl pilot on homomorphic encryption.
Contribution to the DigEnlight workshop https://digitalenlightenment.org/event/workshop-towards-european-ecosystem-health-care-data Oct 25 2017, Brussels.
The document proposes the creation of a patient-owned health data cooperative called Our Health Data Cooperative (OHDC) to build a learning health system. OHDC would allow patients to share their de-identified health information to facilitate research on best practices and treatments. It would give patients access to their health data and research findings. OHDC would generate revenue from subscriptions to access the data and from third-party services like telemedicine that it would offer members. The goal is to improve patient outcomes and lower healthcare costs through a transparent, collaborative system.
The document discusses the complex healthcare ecosystem and the importance of stakeholder management. It notes there are many diverse stakeholders in healthcare, including patients, companies, policymakers, educators, funders, third sector groups, and healthcare providers. Each of these stakeholder groups have differing and sometimes competing interests. Effective stakeholder management requires careful coordination, priority setting, and strategic planning to manage relationships between these various groups. Examples provided include establishing community advisory boards to facilitate two-way dialogue between stakeholders.
The document discusses challenges with information sharing across health and social care systems in the UK, including different data formats, lack of integration, and lack of trust. It describes a project by Symphonic Software to deliver a governance layer for the London Digital Programme, which aims to allow the 7,000 organizations involved in patient care in London to access patient records while meeting data controller agreements and patient consent preferences. The governance layer will provide policy translation, identity management, and automated generation of information sharing policies to improve integrated care.
The document outlines New Zealand's Health Information Strategy (HIS-NZ) which signals increased sharing of personal health information through 12 action zones rather than a single electronic health record. It discusses principles for information sharing including using key health event summaries to support integrated care while maintaining distributed electronic health records. The strategy will be overseen by an independent ministerial committee and emphasizes stakeholder engagement including improving consumer involvement.
Health IT and Public Policy Issues Dr. Rich Hodgemihinpr
The document provides an overview of current public policy issues related to health information technology in the United States. It discusses HIMSS' role in advocating for health IT and outlines their public policy process. Key points include:
- HIMSS advocates for health IT through establishing annual policy principles, priorities, and statements to guide their work.
- The top congressional affairs priorities for 2013 are preserving HITECH EHR incentive funding, advancing patient data matching, and educating Congress on health IT issues.
- Federal legislative and regulatory activity around topics like meaningful use, interoperability, privacy/security, and medical device regulation will impact the health IT field.
SmartHealth Ecosystem Event 12.6.2019, Ville Salaspuro presentation on Data driven solutions in the point of care - how to improve cost-effectiveness and integration of care
The document summarizes the care.data program in the NHS which aims to improve patient care through better use of data. It will provide comprehensive and timely healthcare data to patients, professionals, providers and researchers. The program will extract primary care data from GP practices with patient consent to join it with other hospital data. It is being rolled out in phases and aims to eventually include social care and community health data. Strict information governance standards are in place to protect patient privacy and data security. The goal is to help identify variations or gaps in care quality, monitor outcomes over time, and support health services research.
Report capturing the content of the MSD Access, Innovation, and Affordability Forum organized by MSD in 2007 (Munich) and 2008 (Istanbul). The report was produced for the third edition of the AIA Forum, which took place in Warsaw in 2009.
Promoting an ethical and GDPR-compliant approach to learning analyticsJisc
This document summarizes a presentation on promoting an ethical and GDPR-compliant approach to learning analytics. It discusses three key issues: whether allowing students to opt out of data collection could negatively impact their academic progress, what students should do if analytic suggestions conflict with their study goals, and how institutions can avoid overly simplistic metrics. The presentation also provides an overview of potential issues with learning analytics like invasion of privacy and examines students' rights under the new GDPR regulations.
This document discusses consumer perspectives and concerns regarding personal health information and health IT. It notes that consumers want health information that supports informed decisions, and they have concerns about privacy, security, and how information may be used and shared without their consent. The document also outlines recommendations from a consumer forum to ensure community understanding and support for appropriate electronic health information use.
The document discusses the MS Association's plans to develop a mobile app to help people with multiple sclerosis (MS) manage their condition. The app would provide social support tools, improve communication between patients and doctors, monitor treatment effectiveness using self-reported data, and offer educational resources and clinical trial information. It would use analytics of personal health data to provide preventative care notifications, health risk alerts, and personalized tips. The Association plans to market the app through various online and offline channels.
Panel: Achieving Interoperability Dr. John Loonsk & Janet Kingmihinpr
The document discusses achieving interoperability in health IT systems. It describes the current state of interoperability as poor. It outlines key aspects of interoperability including data exchange, system portability, supporting infrastructure, shared functions, and coordinated care information. The document also discusses the process for inducing interoperability, including using incentives, documenting requirements, identifying standards, implementation guidance, and testing. It notes there is still significant work remaining to expand interoperability in terms of breadth across organizations and depth of clinical data elements.
Patient-generated data is health-related data created by patients to help manage their condition, including symptoms, medication adherence, and biometric data from wearable devices. This data is distinct from clinical data as it is recorded by patients outside of healthcare settings. Technologies allow widespread collection of patient data to improve monitoring and research. However, ensuring high quality, standardized data sharing while protecting patient privacy and engaging patients requires governance plans and may require significant resources from patient organizations.
eHealth Practice in Europe: where do we stand?chronaki
eHealth as the use of Information and communication technologies in the practice of health care comprises Electronic health records, Healthcare information exchange cross-jurisdictions, Personal health records, Telehealth, telemedicine and remote monitoring.
There are several efforts to reflect and measure the practice of eHealth including efforts by the OECD and WHO, but in general there is little reported sharing of health data particularly with patients. Specific barriers frequently mentioned are supporting policies and coherent widely implemented standards.
The presentation discusses relevant efforts and programs supported by the European Commission such as the eHealth DSI, eStandards, ASSESS CT, and openMedicine aiming at large scale eHealth adoption It calls for engagement of European Society, its national societies, and its members.
The document proposes an integrated healthcare strategy to prevent falls in older patients. The strategy aims to identify at-risk patients, enable community-based interventions, and prevent hospital admissions through ongoing risk assessment using biometric sensors and telehealth to facilitate engagement among patients, caregivers and providers. The proposed design involves collecting baseline patient data, ongoing monitoring of fall risks, and telehealth to enable early community interventions. The goal is to improve outcomes by reducing emergency department presentations and hospitalizations for older patients at risk of falls.
What's on the Horizon, How HIT Supports Practice Transformation and Chronic D...Donald Nease
This document discusses how health information technology (HIT) supports practice transformation and chronic disease management. It notes that while EMR adoption has increased, user satisfaction has decreased. HIT provides metrics for both individual patients and populations, but current EMRs are challenged in providing clinical decision support and acting as the "yardsticks" for measuring care quality. Alternative systems like registries may better track chronic conditions. The document envisions HIT that engages patients and facilitates self-management. Overall it argues that fully realizing HIT's potential will require addressing workflow, documentation, and decision support to improve both individual care and population health outcomes.
SmartHealth Ecosystem Event 12.6.2019, Matti Ristimäki presentation on Healthcare bigdata - accelerating algorithm development for personalized medicine
Connect After Clinic: How Digital Technologies Can Strengthen the Physician-P...Nisha Cooch, PhD
“Smart IT must accommodate, preserve, and uplift interpersonal relationships in health care.”
-Michael Weiner, MD, MPH & Paul Biondich, MD
The physician-patient relationship is an important but often overlooked contributor to patient health. Impressively, a good physician-patient relationship is just as important to health outcomes as the use of well-established medical interventions. It is therefore critical that physicians and patients alike commit to the development of this important connection and explore opportunities to strengthen it.
In this presentation, I discuss what contributes to a healthy physician-patient relationship, concerns about how technology may threaten it, and how to best leverage technology to improve it.
Open government platforms U.S. federal governmentInes Mergel
As part of the Open Government initiative, the U.S. federal government has set up a series of platforms to inform, educate, engage and collaborate with the public. This document categorizes the existing platforms based on their OG contributions, goals, audience, processes, and observed outcomes.
This document provides an overview of the MiHIN (Michigan Health Information Network) and health information exchange (HIE) in Michigan. It discusses how HIE benefits care coordination by avoiding duplicate tests and enabling timely diagnosis. It also outlines how MiHIN facilitates statewide HIE through a network of networks model with multiple qualified organizations connected to share data. The governance structure and various workgroups that support MiHIN operations are described.
Health 2.0 aims to improve healthcare through the use of social media, open standards, web technologies and mobile devices. This allows for greater communication between patients and healthcare providers, more information sharing about diseases, and collaboration between those experiencing similar health issues. By utilizing technologies like blogs, podcasts and RSS feeds, patients can stay informed, medical professionals can collaborate, and data can be shared for research purposes. The expected benefits are increased patient safety, clinical efficiency, healthcare quality and lower overall costs through more ubiquitous health information access.
North East Health CIO Network, Mark Thomas, Chair of the North East Health CI...mfolkard
Mark Thomas, Chair of the North East Health CIO Network, presented at the Health Informatics Forum on collaboration and integrated care. The objectives were to set the context of the forum in aiming for collaboration across integrated care systems without boundaries through pan-community services and empowering healthcare clinicians with information. The forum promotes sharing knowledge and resources across organizations from coast to coast in the North East and North West through collaborative projects, bids, and expertise. Integrated care systems supported by informatics can provide accurate information in real time to clinicians across primary, community, and acute care to improve quality, safety, and decision making for patients.
This document discusses the importance of patient preference studies in influencing health system decisions and outlines the role of patient advocates. It notes that patient preferences vary between stakeholders, diseases, and within diseases between subgroups. Developing robust patient preference studies requires expertise in methodologies, avoiding bias, attribute selection, and ensuring scientific rigor. The document advocates that patient organizations work with academics to design scientifically valid preference studies that capture patients' perspectives on treatment risks, benefits, and what constitutes an acceptable outcome for their condition. Ultimately, the document argues that no stakeholder should express preferences on behalf of patients and that data not directly gathered from patients should have limited weight in decision making.
From personal health data to a personalized adviceWessel Kraaij
Invited talk at the health track of ICT.OPEN 2018, 20-3-2018
1. Related Data science challenges to Digital Health trends
2. Designing an infrastructure to support secure learning from distributed health data repositories, for personalized health advice
3. Supporting patients with rare diseases with patient driven research and the generation of new hypotheses based on patient experiences.
SmartHealth Ecosystem Event 12.6.2019, Ville Salaspuro presentation on Data driven solutions in the point of care - how to improve cost-effectiveness and integration of care
The document summarizes the care.data program in the NHS which aims to improve patient care through better use of data. It will provide comprehensive and timely healthcare data to patients, professionals, providers and researchers. The program will extract primary care data from GP practices with patient consent to join it with other hospital data. It is being rolled out in phases and aims to eventually include social care and community health data. Strict information governance standards are in place to protect patient privacy and data security. The goal is to help identify variations or gaps in care quality, monitor outcomes over time, and support health services research.
Report capturing the content of the MSD Access, Innovation, and Affordability Forum organized by MSD in 2007 (Munich) and 2008 (Istanbul). The report was produced for the third edition of the AIA Forum, which took place in Warsaw in 2009.
Promoting an ethical and GDPR-compliant approach to learning analyticsJisc
This document summarizes a presentation on promoting an ethical and GDPR-compliant approach to learning analytics. It discusses three key issues: whether allowing students to opt out of data collection could negatively impact their academic progress, what students should do if analytic suggestions conflict with their study goals, and how institutions can avoid overly simplistic metrics. The presentation also provides an overview of potential issues with learning analytics like invasion of privacy and examines students' rights under the new GDPR regulations.
This document discusses consumer perspectives and concerns regarding personal health information and health IT. It notes that consumers want health information that supports informed decisions, and they have concerns about privacy, security, and how information may be used and shared without their consent. The document also outlines recommendations from a consumer forum to ensure community understanding and support for appropriate electronic health information use.
The document discusses the MS Association's plans to develop a mobile app to help people with multiple sclerosis (MS) manage their condition. The app would provide social support tools, improve communication between patients and doctors, monitor treatment effectiveness using self-reported data, and offer educational resources and clinical trial information. It would use analytics of personal health data to provide preventative care notifications, health risk alerts, and personalized tips. The Association plans to market the app through various online and offline channels.
Panel: Achieving Interoperability Dr. John Loonsk & Janet Kingmihinpr
The document discusses achieving interoperability in health IT systems. It describes the current state of interoperability as poor. It outlines key aspects of interoperability including data exchange, system portability, supporting infrastructure, shared functions, and coordinated care information. The document also discusses the process for inducing interoperability, including using incentives, documenting requirements, identifying standards, implementation guidance, and testing. It notes there is still significant work remaining to expand interoperability in terms of breadth across organizations and depth of clinical data elements.
Patient-generated data is health-related data created by patients to help manage their condition, including symptoms, medication adherence, and biometric data from wearable devices. This data is distinct from clinical data as it is recorded by patients outside of healthcare settings. Technologies allow widespread collection of patient data to improve monitoring and research. However, ensuring high quality, standardized data sharing while protecting patient privacy and engaging patients requires governance plans and may require significant resources from patient organizations.
eHealth Practice in Europe: where do we stand?chronaki
eHealth as the use of Information and communication technologies in the practice of health care comprises Electronic health records, Healthcare information exchange cross-jurisdictions, Personal health records, Telehealth, telemedicine and remote monitoring.
There are several efforts to reflect and measure the practice of eHealth including efforts by the OECD and WHO, but in general there is little reported sharing of health data particularly with patients. Specific barriers frequently mentioned are supporting policies and coherent widely implemented standards.
The presentation discusses relevant efforts and programs supported by the European Commission such as the eHealth DSI, eStandards, ASSESS CT, and openMedicine aiming at large scale eHealth adoption It calls for engagement of European Society, its national societies, and its members.
The document proposes an integrated healthcare strategy to prevent falls in older patients. The strategy aims to identify at-risk patients, enable community-based interventions, and prevent hospital admissions through ongoing risk assessment using biometric sensors and telehealth to facilitate engagement among patients, caregivers and providers. The proposed design involves collecting baseline patient data, ongoing monitoring of fall risks, and telehealth to enable early community interventions. The goal is to improve outcomes by reducing emergency department presentations and hospitalizations for older patients at risk of falls.
What's on the Horizon, How HIT Supports Practice Transformation and Chronic D...Donald Nease
This document discusses how health information technology (HIT) supports practice transformation and chronic disease management. It notes that while EMR adoption has increased, user satisfaction has decreased. HIT provides metrics for both individual patients and populations, but current EMRs are challenged in providing clinical decision support and acting as the "yardsticks" for measuring care quality. Alternative systems like registries may better track chronic conditions. The document envisions HIT that engages patients and facilitates self-management. Overall it argues that fully realizing HIT's potential will require addressing workflow, documentation, and decision support to improve both individual care and population health outcomes.
SmartHealth Ecosystem Event 12.6.2019, Matti Ristimäki presentation on Healthcare bigdata - accelerating algorithm development for personalized medicine
Connect After Clinic: How Digital Technologies Can Strengthen the Physician-P...Nisha Cooch, PhD
“Smart IT must accommodate, preserve, and uplift interpersonal relationships in health care.”
-Michael Weiner, MD, MPH & Paul Biondich, MD
The physician-patient relationship is an important but often overlooked contributor to patient health. Impressively, a good physician-patient relationship is just as important to health outcomes as the use of well-established medical interventions. It is therefore critical that physicians and patients alike commit to the development of this important connection and explore opportunities to strengthen it.
In this presentation, I discuss what contributes to a healthy physician-patient relationship, concerns about how technology may threaten it, and how to best leverage technology to improve it.
Open government platforms U.S. federal governmentInes Mergel
As part of the Open Government initiative, the U.S. federal government has set up a series of platforms to inform, educate, engage and collaborate with the public. This document categorizes the existing platforms based on their OG contributions, goals, audience, processes, and observed outcomes.
This document provides an overview of the MiHIN (Michigan Health Information Network) and health information exchange (HIE) in Michigan. It discusses how HIE benefits care coordination by avoiding duplicate tests and enabling timely diagnosis. It also outlines how MiHIN facilitates statewide HIE through a network of networks model with multiple qualified organizations connected to share data. The governance structure and various workgroups that support MiHIN operations are described.
Health 2.0 aims to improve healthcare through the use of social media, open standards, web technologies and mobile devices. This allows for greater communication between patients and healthcare providers, more information sharing about diseases, and collaboration between those experiencing similar health issues. By utilizing technologies like blogs, podcasts and RSS feeds, patients can stay informed, medical professionals can collaborate, and data can be shared for research purposes. The expected benefits are increased patient safety, clinical efficiency, healthcare quality and lower overall costs through more ubiquitous health information access.
North East Health CIO Network, Mark Thomas, Chair of the North East Health CI...mfolkard
Mark Thomas, Chair of the North East Health CIO Network, presented at the Health Informatics Forum on collaboration and integrated care. The objectives were to set the context of the forum in aiming for collaboration across integrated care systems without boundaries through pan-community services and empowering healthcare clinicians with information. The forum promotes sharing knowledge and resources across organizations from coast to coast in the North East and North West through collaborative projects, bids, and expertise. Integrated care systems supported by informatics can provide accurate information in real time to clinicians across primary, community, and acute care to improve quality, safety, and decision making for patients.
This document discusses the importance of patient preference studies in influencing health system decisions and outlines the role of patient advocates. It notes that patient preferences vary between stakeholders, diseases, and within diseases between subgroups. Developing robust patient preference studies requires expertise in methodologies, avoiding bias, attribute selection, and ensuring scientific rigor. The document advocates that patient organizations work with academics to design scientifically valid preference studies that capture patients' perspectives on treatment risks, benefits, and what constitutes an acceptable outcome for their condition. Ultimately, the document argues that no stakeholder should express preferences on behalf of patients and that data not directly gathered from patients should have limited weight in decision making.
From personal health data to a personalized adviceWessel Kraaij
Invited talk at the health track of ICT.OPEN 2018, 20-3-2018
1. Related Data science challenges to Digital Health trends
2. Designing an infrastructure to support secure learning from distributed health data repositories, for personalized health advice
3. Supporting patients with rare diseases with patient driven research and the generation of new hypotheses based on patient experiences.
This document discusses national trends in health information exchange and granular consent. It begins with introductions and an agenda, then covers learning objectives about types of HIE, sensitive health data, and granular consent requirements. It demonstrates HIE through a game and discusses query-based, directed, and consumer-mediated exchange. It also covers fair information practice principles, privacy by design principles, examples of sensitive data, and current provider processes for release of information. The document discusses the current state of HIE, core consent options, how states are handling consent, relevant laws, and a comparison of HIE consent capabilities. It closes by asking what the future of HIE and consent should look like.
Health IT Data Security – An Overview of Privacy, Compliance, and Technology ...M2SYS Technology
Radical advancements in health IT development and implementation have pushed the issue of health data security to the forefront of the collective healthcare provider mindset as they attempt to strike a balance between patient access to electronic health record protected health information (PHI) and data protection. The fact that so many health IT vendors now have access to and possess protected health information necessitated shift changes in the Health Insurance Portability and Accountability Act (HIPAA) of 1996 which was enacted to establish ground rules for the privacy protection of individually identifiable health information.
We invited Mac McMillan, Chair of the HIMSS Privacy and Security Task Force to discuss what these new changes are, define their parameters, the mission of the HIMSS PRivacy & Security Task Force, his definition of what “privacy” actually is, comments on new technology that are viable options for healthcare providers to implement as a way to protect access to sensitive patient data, and his thoughts on the increased adoption of PHI management applications such as Microsoft HealthVault.
Listen in to this podcast for more information on the latest health IT industry developments and regulations that govern PHI and for insight from Mac on why healthcare providers and third party vendors should pay close attention to compliance with recent HIPAA changes.
Digital technologies like wireless sensors, genomics, EHRs, mobile apps, and big data analytics can significantly help patients but cannot replace human compassion and advocacy. These technologies can improve patient engagement, access to information, and personalized care. However, the most effective patient advocates will still be human beings who can combine technology tools with qualities like empathy, communication skills, and devotion of time to help patients navigate the healthcare system.
Improving health care outcomes with responsible data scienceWessel Kraaij
Keynote presentation by Wessel Kraaij at the Dutch pattern recognition and impage processing society (NVPBV) 29/5/2018, Eindhoven.
This talk discusses
1. trends in health care and respondible data science and their intersection
2. Secure federated analytics on distributed data repositories
3. Generating clinically relevant hypotheses from patient forum discussions.
This document discusses health-related data, including types of data, legal constraints around sharing data, and best practices for managing data. It covers:
1) Different types of health data like medical records, generated data, and acquired data. It also defines personal, identifying, and anonymized data.
2) Legal requirements for sharing data, including various acts and regulations around privacy, confidentiality, and individuals' rights to their data.
3) Best practices for managing data sharing and security, including obtaining consent, implementing access agreements, having governance committees, and separating identifiable from non-identifiable data.
This document discusses ethics in telemedicine, blogging, and the patient-professional relationship in the digital age. It defines telemedicine and outlines some fundamental ethical responsibilities of telemedicine providers, including upholding professionalism, obtaining informed consent, and protecting patient privacy and security. Regarding blogging, the document discusses the blogger's code of ethics, including being truthful, transparent, and giving credit where due. It emphasizes maintaining appropriate boundaries in online interactions with patients through social media to preserve patient confidentiality and the professional relationship.
The document discusses legal and ethical issues related to using therapist AI and ChatGPT. It outlines three primary areas where AI and ChatGPT are being used: 1) information retrieval and research, 2) personalized case analysis, diagnosis, and treatment plans, and 3) client and patient education. For each use, it notes both benefits and ethical considerations that must be addressed, such as ensuring privacy, transparency, and avoiding biases. It also discusses other related topics like FDA regulations of clinical decision software, potential tort liability for AI errors or harms, and whether AI owes a duty of care to clients.
Legal and ethical considerations in nursing informaticsAHMED ZINHOM
This document outlines key concepts in nursing informatics related to information security, privacy, and ethics. It defines terms like privacy, confidentiality, consent and discusses threats to security like hackers. It also covers security measures to protect information like firewalls and passwords. Specific issues around internet technology, mobile devices and the impact on health information security are examined. Ten security principles related to accountability, consent and challenges to compliance are also overviewed.
The document discusses building public trust for data use in new health technologies. It summarizes the Patients Association's position that while patients support data sharing under proper controls to improve care, many have low awareness of current data practices. Specifically, the PA advocates for opt-in consent by default, clear descriptions of what data is shared and why, and strengthened security assurances. The document also notes some past issues that undermined public trust and the need for transparency regarding any AI decision-making in the future.
Standards of dental informatics, security issuesEbtissam Al-Madi
The document discusses standards, security, privacy, and costs related to dental informatics. It notes that standards promote consistent naming, allow better use of data, and enhance system integration. Benefits include interoperability, while limitations can include stifling innovation. Security issues include ownership of information, informed consent, and conflicts between privacy and business interests. Costs of informatics include health IT costs and return on investment, with payback periods averaging 2.5 years when systems are fully used and have supportive cultures.
MHEALTH
1) mHealth has the potential to improve healthcare delivery through increased efficiency, access to information, and ability to positively impact patient behavior and health outcomes.
2) However, mHealth faces many barriers to widespread adoption including resistance from entrenched healthcare providers and systems, lack of incentives for different stakeholders, and performance issues with many early mHealth applications.
3) For mHealth to succeed, applications must address important healthcare pain points, have a validated product, and a detailed adoption plan that engages key decision makers and addresses barriers within the complex healthcare system. Widespread adoption may take many years.
Legal barriers to better use of health data to deliver pharmaceutical innovationOffice of Health Economics
The document discusses legal barriers to using health data to deliver pharmaceutical innovation. It conducted interviews with pharmaceutical industry members and external experts to identify key barriers. It found uncertainties around appropriate legal bases for data processing under GDPR without consent, heterogeneous data access across countries, and issues with anonymization. It proposes solutions like developing common standards, clarifying GDPR exemptions, and an industry code of conduct to address uncertainties and build trust. The conclusion states that while GDPR does not inherently create barriers, uncertainties remain, and stakeholders should work together proactively to enable important research.
Pharma must change the ways it deals with physicians and patients. These three digital health technology companies will revolutionize the way Pharma does business.
Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.
This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.
Learn more at http://petrieflom.law.harvard.edu/events/details/2016-annual-conference.
Panel: FROM SMALL TO BIG TO RICH DATA: Dealing with new sources of data in Biomedicine Precision and Participatory Medicine
Fernando J. Martin-Sanchez, Professor and Chair of Health Informatics at Melbourne Medical School, discusses new sources of data in biomedicine including small, big, and rich data. He describes how small data connects people with meaningful insights from big data to be understandable for everyday tasks. Martin-Sanchez also discusses precision medicine, participatory health, and how convergence between the two can help integrate multiple data sources including genomics, the exposome, and digital health to improve disease prevention and treatment outcomes.
McMenamin - Slidedeck for Slideshare - Therapist AI & ChatGPT- How to Use Leg...Marlene Maheu
This document discusses some of the legal and ethical issues involved in using AI systems like therapist AI and ChatGPT. It outlines that while AI shows promise in areas like information retrieval, diagnosis, and treatment planning, there are also significant risks regarding privacy, bias, lack of explanation for results, and lack of empathy. The document also discusses regulatory issues involving licensure of AI systems, FDA oversight of clinical decision support tools, potential tort liability for harms caused by AI, and whether patients could establish a standard of care for AI. Overall it aims to help mental health professionals minimize ethical risks when using AI tools.
Evaluating a Wrist Worn Application for Students with Neurodevelopmental Diso...Vivian Motti
This document summarizes research evaluating WELI, a wrist-worn smartwatch application designed to assist young adults with neurodevelopmental disorders in inclusive college classes. The research involved requirement elicitation, prototyping, user studies, and a field study testing WELI over two semesters. Key findings were that WELI allowed for discreet and subtle assistance, with focus and reward interventions being most common and effective. However, wearables may also introduce distractions, and more research is needed on long-term engagement and personalized intervention models.
This document discusses several data breaches that have exposed the personal information of millions of individuals. It also discusses how over 12 million Americans have shared their DNA data with companies like 23andMe and AncestryDNA. While this can help medical research, it also raises privacy concerns about potential genetic discrimination and challenges with informed consent. The document provides recommendations for patients, practitioners, and stakeholders to help address these privacy challenges through practices like informing patients, limiting data use, ensuring accountability, and identifying risks.
Wearable Health: Opportunities and ChallengesVivian Motti
This document discusses opportunities and challenges with wearable health technologies. It describes various form factors like watches, clothing, and accessories that can incorporate sensors to continuously monitor users. Sensors can track metrics like heart rate, activity, and environment. Wearables provide opportunities for constant data collection and easy access to prompt users. However, challenges include limited battery life, privacy concerns over personal data collection, and ensuring comfortable user experiences. While wearable technology adoption is increasing, sustained use remains difficult and open questions around standards, energy usage, and mainstream appeal still exist.
This study analyzed 500 Instagram posts with the hashtag #Microcephaly to understand how caregivers of patients with microcephaly use social media. The majority of posts showed female patients and their mothers engaging in daily routines. Caregivers used Instagram to share information, celebrate milestones, fundraise, and provide social support to cope with caring for patients. Hashtags and captions were mostly positive and focused on love, faith, and patients' progress. The study found Instagram is an accessible and empowering tool for caregivers.
poster presented at WISH 2019
at CHI 2019
Write Mind: an interactive journaling tool for caregivers
including sentiment analysis and resource recommendations
WriteMind is a journaling tool for caregivers that uses sentiment analysis of diary entries to provide resource recommendations. It aims to help with self-care and raise awareness of caregivers' sentiments by analyzing their writings. While developed based on caregiver interviews, some evaluations found that not all caregivers have time for writing daily unless it is already a habit.
Wearable Life: a Wrist-Worn Application to Assist Students in Special EducationVivian Motti
Slides presented at the HCII 2017 - International Conference on Human Computer Interaction, describing the implementation of Wearable Life - a smartwatch application developed to support students with intellectual and developmental disabilities in a post-secondary inclusive educational program
How information systems are built or acquired puts information, which is what they should be about, in a secondary place. Our language adapted accordingly, and we no longer talk about information systems but applications. Applications evolved in a way to break data into diverse fragments, tightly coupled with applications and expensive to integrate. The result is technical debt, which is re-paid by taking even bigger "loans", resulting in an ever-increasing technical debt. Software engineering and procurement practices work in sync with market forces to maintain this trend. This talk demonstrates how natural this situation is. The question is: can something be done to reverse the trend?
[OReilly Superstream] Occupy the Space: A grassroots guide to engineering (an...Jason Yip
The typical problem in product engineering is not bad strategy, so much as “no strategy”. This leads to confusion, lack of motivation, and incoherent action. The next time you look for a strategy and find an empty space, instead of waiting for it to be filled, I will show you how to fill it in yourself. If you’re wrong, it forces a correction. If you’re right, it helps create focus. I’ll share how I’ve approached this in the past, both what works and lessons for what didn’t work so well.
What is an RPA CoE? Session 1 – CoE VisionDianaGray10
In the first session, we will review the organization's vision and how this has an impact on the COE Structure.
Topics covered:
• The role of a steering committee
• How do the organization’s priorities determine CoE Structure?
Speaker:
Chris Bolin, Senior Intelligent Automation Architect Anika Systems
Digital Banking in the Cloud: How Citizens Bank Unlocked Their MainframePrecisely
Inconsistent user experience and siloed data, high costs, and changing customer expectations – Citizens Bank was experiencing these challenges while it was attempting to deliver a superior digital banking experience for its clients. Its core banking applications run on the mainframe and Citizens was using legacy utilities to get the critical mainframe data to feed customer-facing channels, like call centers, web, and mobile. Ultimately, this led to higher operating costs (MIPS), delayed response times, and longer time to market.
Ever-changing customer expectations demand more modern digital experiences, and the bank needed to find a solution that could provide real-time data to its customer channels with low latency and operating costs. Join this session to learn how Citizens is leveraging Precisely to replicate mainframe data to its customer channels and deliver on their “modern digital bank” experiences.
HCL Notes und Domino Lizenzkostenreduzierung in der Welt von DLAUpanagenda
Webinar Recording: https://www.panagenda.com/webinars/hcl-notes-und-domino-lizenzkostenreduzierung-in-der-welt-von-dlau/
DLAU und die Lizenzen nach dem CCB- und CCX-Modell sind für viele in der HCL-Community seit letztem Jahr ein heißes Thema. Als Notes- oder Domino-Kunde haben Sie vielleicht mit unerwartet hohen Benutzerzahlen und Lizenzgebühren zu kämpfen. Sie fragen sich vielleicht, wie diese neue Art der Lizenzierung funktioniert und welchen Nutzen sie Ihnen bringt. Vor allem wollen Sie sicherlich Ihr Budget einhalten und Kosten sparen, wo immer möglich. Das verstehen wir und wir möchten Ihnen dabei helfen!
Wir erklären Ihnen, wie Sie häufige Konfigurationsprobleme lösen können, die dazu führen können, dass mehr Benutzer gezählt werden als nötig, und wie Sie überflüssige oder ungenutzte Konten identifizieren und entfernen können, um Geld zu sparen. Es gibt auch einige Ansätze, die zu unnötigen Ausgaben führen können, z. B. wenn ein Personendokument anstelle eines Mail-Ins für geteilte Mailboxen verwendet wird. Wir zeigen Ihnen solche Fälle und deren Lösungen. Und natürlich erklären wir Ihnen das neue Lizenzmodell.
Nehmen Sie an diesem Webinar teil, bei dem HCL-Ambassador Marc Thomas und Gastredner Franz Walder Ihnen diese neue Welt näherbringen. Es vermittelt Ihnen die Tools und das Know-how, um den Überblick zu bewahren. Sie werden in der Lage sein, Ihre Kosten durch eine optimierte Domino-Konfiguration zu reduzieren und auch in Zukunft gering zu halten.
Diese Themen werden behandelt
- Reduzierung der Lizenzkosten durch Auffinden und Beheben von Fehlkonfigurationen und überflüssigen Konten
- Wie funktionieren CCB- und CCX-Lizenzen wirklich?
- Verstehen des DLAU-Tools und wie man es am besten nutzt
- Tipps für häufige Problembereiche, wie z. B. Team-Postfächer, Funktions-/Testbenutzer usw.
- Praxisbeispiele und Best Practices zum sofortigen Umsetzen
Freshworks Rethinks NoSQL for Rapid Scaling & Cost-EfficiencyScyllaDB
Freshworks creates AI-boosted business software that helps employees work more efficiently and effectively. Managing data across multiple RDBMS and NoSQL databases was already a challenge at their current scale. To prepare for 10X growth, they knew it was time to rethink their database strategy. Learn how they architected a solution that would simplify scaling while keeping costs under control.
Main news related to the CCS TSI 2023 (2023/1695)Jakub Marek
An English 🇬🇧 translation of a presentation to the speech I gave about the main changes brought by CCS TSI 2023 at the biggest Czech conference on Communications and signalling systems on Railways, which was held in Clarion Hotel Olomouc from 7th to 9th November 2023 (konferenceszt.cz). Attended by around 500 participants and 200 on-line followers.
The original Czech 🇨🇿 version of the presentation can be found here: https://www.slideshare.net/slideshow/hlavni-novinky-souvisejici-s-ccs-tsi-2023-2023-1695/269688092 .
The videorecording (in Czech) from the presentation is available here: https://youtu.be/WzjJWm4IyPk?si=SImb06tuXGb30BEH .
5th LF Energy Power Grid Model Meet-up SlidesDanBrown980551
5th Power Grid Model Meet-up
It is with great pleasure that we extend to you an invitation to the 5th Power Grid Model Meet-up, scheduled for 6th June 2024. This event will adopt a hybrid format, allowing participants to join us either through an online Mircosoft Teams session or in person at TU/e located at Den Dolech 2, Eindhoven, Netherlands. The meet-up will be hosted by Eindhoven University of Technology (TU/e), a research university specializing in engineering science & technology.
Power Grid Model
The global energy transition is placing new and unprecedented demands on Distribution System Operators (DSOs). Alongside upgrades to grid capacity, processes such as digitization, capacity optimization, and congestion management are becoming vital for delivering reliable services.
Power Grid Model is an open source project from Linux Foundation Energy and provides a calculation engine that is increasingly essential for DSOs. It offers a standards-based foundation enabling real-time power systems analysis, simulations of electrical power grids, and sophisticated what-if analysis. In addition, it enables in-depth studies and analysis of the electrical power grid’s behavior and performance. This comprehensive model incorporates essential factors such as power generation capacity, electrical losses, voltage levels, power flows, and system stability.
Power Grid Model is currently being applied in a wide variety of use cases, including grid planning, expansion, reliability, and congestion studies. It can also help in analyzing the impact of renewable energy integration, assessing the effects of disturbances or faults, and developing strategies for grid control and optimization.
What to expect
For the upcoming meetup we are organizing, we have an exciting lineup of activities planned:
-Insightful presentations covering two practical applications of the Power Grid Model.
-An update on the latest advancements in Power Grid -Model technology during the first and second quarters of 2024.
-An interactive brainstorming session to discuss and propose new feature requests.
-An opportunity to connect with fellow Power Grid Model enthusiasts and users.
AppSec PNW: Android and iOS Application Security with MobSFAjin Abraham
Mobile Security Framework - MobSF is a free and open source automated mobile application security testing environment designed to help security engineers, researchers, developers, and penetration testers to identify security vulnerabilities, malicious behaviours and privacy concerns in mobile applications using static and dynamic analysis. It supports all the popular mobile application binaries and source code formats built for Android and iOS devices. In addition to automated security assessment, it also offers an interactive testing environment to build and execute scenario based test/fuzz cases against the application.
This talk covers:
Using MobSF for static analysis of mobile applications.
Interactive dynamic security assessment of Android and iOS applications.
Solving Mobile app CTF challenges.
Reverse engineering and runtime analysis of Mobile malware.
How to shift left and integrate MobSF/mobsfscan SAST and DAST in your build pipeline.
Taking AI to the Next Level in Manufacturing.pdfssuserfac0301
Read Taking AI to the Next Level in Manufacturing to gain insights on AI adoption in the manufacturing industry, such as:
1. How quickly AI is being implemented in manufacturing.
2. Which barriers stand in the way of AI adoption.
3. How data quality and governance form the backbone of AI.
4. Organizational processes and structures that may inhibit effective AI adoption.
6. Ideas and approaches to help build your organization's AI strategy.
Fueling AI with Great Data with Airbyte WebinarZilliz
This talk will focus on how to collect data from a variety of sources, leveraging this data for RAG and other GenAI use cases, and finally charting your course to productionalization.
HCL Notes and Domino License Cost Reduction in the World of DLAUpanagenda
Webinar Recording: https://www.panagenda.com/webinars/hcl-notes-and-domino-license-cost-reduction-in-the-world-of-dlau/
The introduction of DLAU and the CCB & CCX licensing model caused quite a stir in the HCL community. As a Notes and Domino customer, you may have faced challenges with unexpected user counts and license costs. You probably have questions on how this new licensing approach works and how to benefit from it. Most importantly, you likely have budget constraints and want to save money where possible. Don’t worry, we can help with all of this!
We’ll show you how to fix common misconfigurations that cause higher-than-expected user counts, and how to identify accounts which you can deactivate to save money. There are also frequent patterns that can cause unnecessary cost, like using a person document instead of a mail-in for shared mailboxes. We’ll provide examples and solutions for those as well. And naturally we’ll explain the new licensing model.
Join HCL Ambassador Marc Thomas in this webinar with a special guest appearance from Franz Walder. It will give you the tools and know-how to stay on top of what is going on with Domino licensing. You will be able lower your cost through an optimized configuration and keep it low going forward.
These topics will be covered
- Reducing license cost by finding and fixing misconfigurations and superfluous accounts
- How do CCB and CCX licenses really work?
- Understanding the DLAU tool and how to best utilize it
- Tips for common problem areas, like team mailboxes, functional/test users, etc
- Practical examples and best practices to implement right away
Generating privacy-protected synthetic data using Secludy and MilvusZilliz
During this demo, the founders of Secludy will demonstrate how their system utilizes Milvus to store and manipulate embeddings for generating privacy-protected synthetic data. Their approach not only maintains the confidentiality of the original data but also enhances the utility and scalability of LLMs under privacy constraints. Attendees, including machine learning engineers, data scientists, and data managers, will witness first-hand how Secludy's integration with Milvus empowers organizations to harness the power of LLMs securely and efficiently.
Introduction of Cybersecurity with OSS at Code Europe 2024Hiroshi SHIBATA
I develop the Ruby programming language, RubyGems, and Bundler, which are package managers for Ruby. Today, I will introduce how to enhance the security of your application using open-source software (OSS) examples from Ruby and RubyGems.
The first topic is CVE (Common Vulnerabilities and Exposures). I have published CVEs many times. But what exactly is a CVE? I'll provide a basic understanding of CVEs and explain how to detect and handle vulnerabilities in OSS.
Next, let's discuss package managers. Package managers play a critical role in the OSS ecosystem. I'll explain how to manage library dependencies in your application.
I'll share insights into how the Ruby and RubyGems core team works to keep our ecosystem safe. By the end of this talk, you'll have a better understanding of how to safeguard your code.
3. Communities
Connected for Kids
501 individuals
University of
Chicago Medicine
1.68 million records
People Inc.
1,000 individuals
American Medical
Collections Agency
20 million victims
Inmediata
1,565,338 individuals
Quest Diagnostics
Optum360
11.9 million records
LabCorp
7.7 million records
BioReference
Laboratories
422,600 customers
[Source: https://www.hipaajournal.com/]
10. More than 12 million Americans have sent in their DNA for
analysis to companies like 23andMe and AncestryDNA
[23andme]
11. Genetic Information
• When signing up to share the DNA with Ancestry,
users opt-in for informed consent research
– Genetic data is sold to third parties, like pharmaceutical
companies
• difficult to delete data once user have consented to it being
used for research
– Users can opt out when agreeing to the service
• Young children can’t give informed consent
• 23andMe and Ancestry do not share genetic
information freely, without a court order
– users can share their information online to find lost
relatives or biological parents
[Sources: www.forbes.com, www.washingtonpost.com]
12. + Scientists use the data to
learn more about genetics,
medical conditions and
diseases to find cures and
treatments
+ To resolve criminal cases
- Genetic discrimination by
employers, insurance
companies, banks, etc.
- People could pay an access
to see the leaked data
13. Addressing key privacy challenges
• Take a holistic approach
• Consider carefully the patient’s benefit
– Individual vs. collective
• Identify potential threats
– What are the misuse case scenarios?
• Cover end to end communication
– From data collection through processing, storage,
sharing and disposal
14.
15. Action - Patient
• Inform about privacy
• Avoid public posts
– Social media, online forums, mobile app reviews
and sharing
• Avoid public devices, networks
• Use trusted communication services
• Best security practices
– Firewalls, passwords, authentication mechanisms
16.
17. Action - Practitioners
• What is the patient’s best interest?
– Always ask their consent
• What are the individual and collective
benefits?
– Short term and long term
• Follow legal and ethical standards
• Training and education on best practices
– Authentication, encryption, trusted channels of
communication
18.
19. Action - Stakeholders
• Inform patients about privacy practices
– Authorization and consent
• Limit use and disclosure
– Mind the entire workflow
– Least privilege principle
• Ensure auditing and accountability
– Account all disclosure, in detail
– Provide access
• Take proactive actions
– Risk analysis
Thanks to the digitalization of medical records, today more patients have access to healthcare services.
Information sharing across practitioners has become easier, as well as the analysis of medical data across healthcare facilities.
The access, analysis and processing of medical data has become more efficient thanks to more powerful computational tools.
For patients, the widespread availability of technology ensured more accurate diagnosis, prompt access to results from exams and lab tests, and the ability to take more informed decisions.
Personal tools available to facilitate health management also emerged, including fitness trackers, and mobile apps that can improve medication adherence and encourage healthier lifestyles.
Having access to more information facilitates analysis, correlations and aggregation, aiding to advance standard care practices and enhancing the understanding of medical conditions.
By retrieving aggregated data healthcare practitioners, patients and caregivers can also take more informed decisions.
Collectively, the benefits include better management of epidemics with more informed policies and campaigns, and more efficient matching between organ donors and patients needing a transplant.
Individually, more information is known about rare diseases, efficacy of treatments and therapies per individual profile facilitating precision medicine.
Digital technologies aid in data collection, analysis, and sharing, however they also increase the risks for privacy breaches.
Creating and implementing access controls became more challenging, especially because:
more data has been collected,
more stakeholders are involved in the care services,
more devices and equipment are used to collect, store and process data, and
more systems are in use to analyze and share medical information.
Although policies exist, enforcing them has been challenging.
Also their enactment is oftentimes expensive and complex to implement
As a consequence a number of breaches of patients’ records have been reported.
According to HIPAA journal, millions of patients have been affected in the past months by data breaches.
Those breaches disclose personal information about the patients (including social security numbers) as well as their medical records (including diagnosis, treatment, and medications).
Because the health data is integrated, the breaches not always affect a single provider, but can impact several institutions and organizations working in collaboration.
Mandatory disclosure of data breaches is beneficial to understand the dimensions of the problem.
But their frequency and impacts show that substantial efforts are needed to ensure better privacy and security protections in practice.
Such breaches have several causes, incidental, accidental, negligence, or malicious, they range from phishing attacks to stolen equipment, usage of untrusted communication channels, and misconfiguration of web servers.
The consequences to the organizations and institutions involved are financial losses, fines, and reputation damage.
For an individual patient, when his/her data is disclosed, family members and relatives can also be affected…
1 minute: High-level explanation of what chapter is about and why it’s important to practice/industry
My book chapter addresses healthcare privacy.
More specifically I focus on how diverse stakeholders can protect patients and their data while delivering high quality care.
I describe privacy concerns, threats and risks that emerge with the digitization of healthcare services, the increasing availability of Internet-of-care-things and the usage of online health services for storing and sharing medical data. To ensure patients’ right to privacy, collaborative efforts from multiple stakeholders are necessary. Not only patients, practitioners, and family members are affected, but also medical organizations, including health insurance companies, laboratories, clinics, and hospitals. Privacy preserving mechanisms go beyond the protection of patients’ data, impacting the infrastructure of medical devices, equipment, networks, and systems entirely. The data lifecycle, cutting across collection, storage, sharing and disposal must be taken into account when implementing privacy protections. Although principles, policies, and regulations exist to address privacy issues, such solutions are limited and also costly to implement. They often fail to cover the capabilities of novel technologies that collect and transmit medical data.
Healthcare privacy can only be ensured through collective efforts that take into account not only the patient, but all stakeholders involved, including physicians, nurses, dentist, therapists, and so on.
As healthcare IT became more pervasive, not only the physician computer should be protected, but the entire ecosystem of devices.
From the patients side, wearable trackers, mobile apps, and personal laptops should be protected.
From the physician side, the electronic health records as well as its underlying infrastructure should be protected.
Besides patients and health practitioners, third party services, including financial institutions, laboratories, clinics and health insurance providers are also involved.
To protect health data, privacy solutions should employ a patient-centric approach considering also the ecosystem of devices and data sources, as well as the multiple stakeholders involved in the process of data collection, storage and sharing.
Privacy considerations cut across different dimensions of equipment, and phases in the data life cycle.
Including personal devices that the patient carries around, such as fitness trackers and smartphones, to larger equipment in a hospital setting dedicated for imaging exams.
Physical artifacts, such as printed records, as well as devices are involved in the privacy control process, including hardware and software systems, as well as the underlying infrastructure for data storage and sharing.
The web also provides valuable information about patients, who oftentimes are unaware about the risks and implications involved when using a mobile app, posting in an online forum, or asking for advice in social media.
The challenges involved escalate when online services are considered.
A patient can reveal information explicitly, in a web search, or mobile app review.
Public posts from instagram, facebook, and other social media channels help to inform diagnosis and medical conditions, unintentionally or not
Mobile app reviews and discussion forum can also disclose sensitive information about a patient.
Inferences can be drawn from the interaction patterns, search history, and social media posts.
Such analysis can provide a lot of medical information about a patient, revealing medical information that not even the patient, or his/her family members, may be aware of
In such cases, when hereditary conditions, genetic information, or transmissible diseases are concerned, the privacy breach not only affects the patients, but their relatives too
Aggregated data from various sources can pose additional privacy risks.
Even when the information published is de-identified or anonymized, combining various sources helps to find unhidden patterns in the data
To address those issues, a number of privacy policies exist
They vary per country
Although they are largely employed, they not always are updated to cover novel technologies
it doesn’t apply to the vast majority of DNA kits
Neither covers social media, wearable devices, fitness trackers
New services, such as 23andme and ancestry, for genetic profiling unveiled a large number of ethical questions for which regulation do not cover.
For each technology piece and process of data management there are best practices involved.
The same applies for stakeholders, since every single individual has its role, responsibilities and duties to protect the patient privacy and his/her personal data.
New services, such as 23andme and ancestry, for genetic profiling unveiled a large number of ethical questions for which regulation do not cover.
For each technology piece and process of data management there are best practices involved.
The same applies for stakeholders, since every single individual has its role, responsibilities and duties to protect the patient privacy and his/her personal data.
https://www.forbes.com/sites/nicolemartin1/2018/12/05/how-dna-companies-like-ancestry-and-23andme-are-using-your-genetic-data/#155fad0a6189
https://www.forbes.com/sites/nicolemartin1/2018/12/05/how-dna-companies-like-ancestry-and-23andme-are-using-your-genetic-data/#155fad0a6189
Since there is no real established precedent for DNA data, there are many issues that could come if your data is leaked and no laws to truly protect you at the moment.
23andme received FDA approval
https://www.washingtonpost.com/lifestyle/2018/12/19/should-you-send-your-kids-dna-andme/?utm_term=.5049e326af5c
Find and convict the rapist and murderer
People find out a lot of surprising information about their families that I think might be more disturbing to kids than finding out about a disease risk that might happen much later in life,” she says.
For instance, paternity revealed by a genetic test can radically change the dynamics of a family and have lasting impacts on children. In a recent case, a man discovered he wasn’t the biological father of his 15-year-old daughter after buying her an AncestryDNA test. A few weeks after getting the results, he filed for divorce from his wife.