[DigiHealth 22] Data Altruism, Web3, and Solving Bias in Medical Data - Dinidh O'Brien
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Bias and a lack of demographic representation in medical data are fundamental issues holding up progress in medical research. As more and more Artificial Intelligence and Machine Learning programs come online, the quality, provenance, and representation of the data used to train them is coming increasingly into focus. This talk presents a solution to this €100BN/year medical data problem, a solution based on the principles of data altruism, privacy and consent, stakeholder incentivisation, and using the best of Web3 technologies to enable legal compliance and global scalability.
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As with all Future Agenda output, this is being published under creative commons (share alike non commercial) so you are free to share and quote as suits.
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The advancement in technology has led to the production of a large volume of human information for economic and medicinal uses. Information plays a significant part in the identification of social issues and helps effective device solutions to daily problems in human life. Although personal and medical info is essential, there are at times when people who have access to the data misuse it for financial gains. When it comes to data privacy, a lot of controversies exists as most people are unaware of their right to privacy. People use internet services where they input sensitive personal or medical data. Most online platforms such as social media have become a significant source of traffic for advertising consumer products and services.
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Abstract
Topic:
Privacy- What medical information should be confidential? Who, if anybody, should have access to medical records?
Thesis Statement
In healthcare centers and overall privacy is the right of every US citizen that should be protected in all its forms by the healthcare organization.
Rationale
1. The purpose of this paper is to identify why security measures are necessary to protect one’s privacy in the medical industry.
2. There are numerous laws, policies and healthcare organizational rules and regulations and statistics that would be helpful for conducting this research.
3. Privacy of a person whether this is me or you, is important then everything. I want to talk on this topic because I think most of us do not know what is happening to us.
4. I have selected textual analysis of books and available internet sources. The reason of this limited research methodology is that I cannot perform field study because of shortage of time.
Rough Draft Ideas
Identity theft in healthcare industry become a common practice and leads to information leakage that may destroy someone’s life. We can eliminate this human right violation by enforcing effective and practical laws. Healthcare organizations should understand their responsibilities and tighten security to protect information of patients.
Table of Contents
Introduction 3
Overview of Privacy Protections with Respect to Medical Records 4
Data Breaches in the Healthcare Industry 5
Healthcare is the biggest Target for Cyber Attack 7
Penalties and Punishments for Hacking Personal Information 9
Penalties 9
Devastating Consequences of Healthcare Data Breaches 10
Conclusion 10
Recommendations 11
Bibliography 12
Introduction
While operating in healthcare organizations need to gather patient’s information that is mostly personal information. It is the moral and legal responsibility of health care organizations to protect the information of their patients and do not share it with people outside of the organization without the patient’s consent. Protecting patient’s information is a crucial element of respect and essential for patients' autonomy and trust in the organization — the US healthcare industry currently facing patient mistrust that is caused because of a lack of trust. When patients experience a lack of confidence they do not share their information with a healthcare professional that causes ineffective treatment. In a 2018 study, Levy, Scherer, Zikmund-Fisher, Larkin, Barnes, & Fagerlin concluded that approximately 81.1% of people withheld medically relevant information from their health-care providers. Patients fail to disclose medically relevant information in front of their clinicians undermine their health and cause patient harm (Levy, 2018).
There are numerous components of patient privacy in healthcare that are personal space, religious and cultural affiliations, physical privacy ...
Page 9 of 15Capstone ProjectYaima OrtizIDS-4934.docx
Page 9 of 15
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IDS-4934
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Abstract
Topic:
Privacy- What medical information should be confidential? Who, if anybody, should have access to medical records?
Thesis Statement
In healthcare centers and overall privacy is the right of every US citizen that should be protected in all its forms by the healthcare organization.
Rationale
1. The purpose of this paper is to identify why security measures are necessary to protect one’s privacy in the medical industry.
2. There are numerous laws, policies and healthcare organizational rules and regulations and statistics that would be helpful for conducting this research.
3. Privacy of a person whether this is me or you, is important then everything. I want to talk on this topic because I think most of us do not know what is happening to us.
4. I have selected textual analysis of books and available internet sources. The reason of this limited research methodology is that I cannot perform field study because of shortage of time.
Rough Draft Ideas
Identity theft in healthcare industry become a common practice and leads to information leakage that may destroy someone’s life. We can eliminate this human right violation by enforcing effective and practical laws. Healthcare organizations should understand their responsibilities and tighten security to protect information of patients.
Table of Contents
Introduction 3
Overview of Privacy Protections with Respect to Medical Records 4
Data Breaches in the Healthcare Industry 5
Healthcare is the biggest Target for Cyber Attack 7
Penalties and Punishments for Hacking Personal Information 9
Penalties 9
Devastating Consequences of Healthcare Data Breaches 10
Conclusion 10
Recommendations 11
Bibliography 12
Introduction
While operating in healthcare organizations need to gather patient’s information that is mostly personal information. It is the moral and legal responsibility of health care organizations to protect the information of their patients and do not share it with people outside of the organization without the patient’s consent. Protecting patient’s information is a crucial element of respect and essential for patients' autonomy and trust in the organization — the US healthcare industry currently facing patient mistrust that is caused because of a lack of trust. When patients experience a lack of confidence they do not share their information with a healthcare professional that causes ineffective treatment. In a 2018 study, Levy, Scherer, Zikmund-Fisher, Larkin, Barnes, & Fagerlin concluded that approximately 81.1% of people withheld medically relevant information from their health-care providers. Patients fail to disclose medically relevant information in front of their clinicians undermine their health and cause patient harm (Levy, 2018).
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Chapter 13 The Evolving ePatientCopyright © 2014 by Mosby, a
Chapter 13
The Evolving ePatient
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
Historical Background and Drivers of the ePatient Evolution
ePatient as a pioneering concept
Technology, policy, and legislative influences
Characteristics of early and contemporary online healthcare consumers
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
2
The term epatient has its origins long before the advent of the Internet. It was coined in 1975 by a physician to describe a patient who is Equipped, Enabled, Empowered, and Engaged.
A number of factors converged to propel the epatient movement including access to the Internet and simplified search capability; policy initiatives focused on safety and quality in healthcare; passage of legislation to encourage widespread adoption of electronic medical records and health care reform legislation calling for patient-centered care and comparative effectiveness research.
People seeking health information online were categorized by their health status. The Well, the Newly Diagnosed, and the Chronically Ill and their caregivers often exhibit information-seeking behaviors based on these health states.
Studies show that 71% of adults seek information, care, and support from healthcare professionals, reinforcing the importance of collaboration.
Contemporary epatients continue to be characterized by their health status as identified in early online healthcare consumers. However, the contemporary epatient has access to a more interactive Internet environment known as Health 2.0.
Activist epatients are increasingly invited to participate in conferences targeting health professionals.
New tools for tracking and monitoring personal health metrics have given rise to the quantified self-movement.
2
ePatient as a Pioneering Concept
1960s: Computer-based, patient-driven medical interviews were conducted.
1975: Term epatient was coined.
1999: eHealth becomes a common term.
Today, eHealth remains a broad concept used to describe Internet or web-based activities that relate to healthcare, yet no consensus about the definition exists among researchers, policymakers, clinicians, or patients.
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
3
Technology, Policy, and Legislative Influences
Use of the Internet has had an unprecedented impact on access to information, sharing, and connectedness.
As of the first quarter of 2012, approximately 2.3 billion people worldwide were on the Internet, with nearly 8 new users being added every second.
Safety and quality flaws in the American healthcare system has led many to become vigilant advocates.
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
4
World Internet Usage
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
5
Figure 13-1 from text.
5
Technology, Policy, and Legislative Influences (Cont.)
Patients should expect the following ...
Commodification of patient opinion
As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness and healthcare. The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in some cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research.
However what may not always be readily apparent to the users of these platforms are the growing commercial uses by many of the platforms’ owners of the archives of the data they contribute. This article examines this phenomenon of what I term ‘the digital patient experience economy’. In so doing I discuss such aspects as prosumption, the phenomena of big data and metric assemblages, the discourse and ethic of sharing and the commercialisation of affective labour via such platforms. I argue that via these online platforms patients’ opinions and experiences may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways.
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Presents a futuristic view based on development in health and medical data processing. the concept of and future of ePatient was discussed. The risks and limitations to digital medicine were presented.
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As chronic diseases are increasingly straining healthcare systems, social factors are gaining importance. Since the birth of social medicine (19th century), we saw many failed attempts to beat the dominance of the biomedical model. Social prescriptions have come, raising hopes that non-biomedical solutions will improve outcomes and optimise resource use. Social Prescriptions connect citizens to support to address social determinants of health and encourage self-care for physical and mental health. Social prescriptions can make us healthier cheaper and with fewer side effects than most drugs. Social prescriptions can become a disruptive force as they can be personalised, improve lifestyle-related diseases, and support non-biomedical issues affected by social determinants of health.
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Running head: DATA PRIVACY 1
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1. Introduction
The advancement in technology has led to the production of a large volume of human information for economic and medicinal uses. Information plays a significant part in the identification of social issues and helps effective device solutions to daily problems in human life. Although personal and medical info is essential, there are at times when people who have access to the data misuse it for financial gains. When it comes to data privacy, a lot of controversies exists as most people are unaware of their right to privacy. People use internet services where they input sensitive personal or medical data. Most online platforms such as social media have become a significant source of traffic for advertising consumer products and services.
Most websites use the information which the users enter and optimize the searches on the internet. Search engines such as Google use browser cookies to direct specific ads to some clients depending on the critical works in the history of individual searches. Online targeted adverts seem like exploitation of internet users or a form of manipulating people to buy some products from an online store. The psychology of the ads employs smart algorithms which use human information to identify what someone likes on the internet. It is a form of attracting potential clients or generating substantial traffic to a website. As the online adverts become a social issue, there is a need for awareness concerning the impacts of sharing personal or medical info over the internet. Some people claim that information leakage leads to misuse of human information and hence there is a need to educate individuals on temporary and lasting consequences of sharing personal info.
2. Personal Data
In Europe, personal info means more than human names alone. A simple detail is shown in the identification documents, bills, and other critical documents which reveal the identity of an individual. Information is a broad field of knowledge which helps Europeans to be aware of their cultural identity, internet addresses, and even critical locational data. In Europe and other modern countries with advanced internet infrastructure, an IP address is personal information which is essential for human identification (ICO, 2018). Own names, addresses, and location data identifies are used to keep a human updated with the time of his location since it is provided by the satellites, and hence information plays an essential role in the process of identifying what people who use the internet. Internet service users do love various things which they search on the internet in their life and the intelligence gathered is then applied in designing catchy adverts which generate traffic to people and benefit some individuals.
There is various information which people input in website forms to open accounts on th.
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Drawing from the 2015 Future Agenda expert discussions around the world, this is a view of emerging trends that will impact the future of health and the pharmaceutical sector over the next decade. Used as both a keynote and stimulus for workshops, this material is shared under Creative Commons Non Commercial license. For more information on the Future Agenda programme please see www.futureagenda.org
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For more information please contact:
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Yaima Ortiz
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Abstract
Topic:
Privacy- What medical information should be confidential? Who, if anybody, should have access to medical records?
Thesis Statement
In healthcare centers and overall privacy is the right of every US citizen that should be protected in all its forms by the healthcare organization.
Rationale
1. The purpose of this paper is to identify why security measures are necessary to protect one’s privacy in the medical industry.
2. There are numerous laws, policies and healthcare organizational rules and regulations and statistics that would be helpful for conducting this research.
3. Privacy of a person whether this is me or you, is important then everything. I want to talk on this topic because I think most of us do not know what is happening to us.
4. I have selected textual analysis of books and available internet sources. The reason of this limited research methodology is that I cannot perform field study because of shortage of time.
Rough Draft Ideas
Identity theft in healthcare industry become a common practice and leads to information leakage that may destroy someone’s life. We can eliminate this human right violation by enforcing effective and practical laws. Healthcare organizations should understand their responsibilities and tighten security to protect information of patients.
Table of Contents
Introduction 3
Overview of Privacy Protections with Respect to Medical Records 4
Data Breaches in the Healthcare Industry 5
Healthcare is the biggest Target for Cyber Attack 7
Penalties and Punishments for Hacking Personal Information 9
Penalties 9
Devastating Consequences of Healthcare Data Breaches 10
Conclusion 10
Recommendations 11
Bibliography 12
Introduction
While operating in healthcare organizations need to gather patient’s information that is mostly personal information. It is the moral and legal responsibility of health care organizations to protect the information of their patients and do not share it with people outside of the organization without the patient’s consent. Protecting patient’s information is a crucial element of respect and essential for patients' autonomy and trust in the organization — the US healthcare industry currently facing patient mistrust that is caused because of a lack of trust. When patients experience a lack of confidence they do not share their information with a healthcare professional that causes ineffective treatment. In a 2018 study, Levy, Scherer, Zikmund-Fisher, Larkin, Barnes, & Fagerlin concluded that approximately 81.1% of people withheld medically relevant information from their health-care providers. Patients fail to disclose medically relevant information in front of their clinicians undermine their health and cause patient harm (Levy, 2018).
There are numerous components of patient privacy in healthcare that are personal space, religious and cultural affiliations, physical privacy ...
Page 9 of 15Capstone ProjectYaima OrtizIDS-4934.docx
Page 9 of 15
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IDS-4934
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Abstract
Topic:
Privacy- What medical information should be confidential? Who, if anybody, should have access to medical records?
Thesis Statement
In healthcare centers and overall privacy is the right of every US citizen that should be protected in all its forms by the healthcare organization.
Rationale
1. The purpose of this paper is to identify why security measures are necessary to protect one’s privacy in the medical industry.
2. There are numerous laws, policies and healthcare organizational rules and regulations and statistics that would be helpful for conducting this research.
3. Privacy of a person whether this is me or you, is important then everything. I want to talk on this topic because I think most of us do not know what is happening to us.
4. I have selected textual analysis of books and available internet sources. The reason of this limited research methodology is that I cannot perform field study because of shortage of time.
Rough Draft Ideas
Identity theft in healthcare industry become a common practice and leads to information leakage that may destroy someone’s life. We can eliminate this human right violation by enforcing effective and practical laws. Healthcare organizations should understand their responsibilities and tighten security to protect information of patients.
Table of Contents
Introduction 3
Overview of Privacy Protections with Respect to Medical Records 4
Data Breaches in the Healthcare Industry 5
Healthcare is the biggest Target for Cyber Attack 7
Penalties and Punishments for Hacking Personal Information 9
Penalties 9
Devastating Consequences of Healthcare Data Breaches 10
Conclusion 10
Recommendations 11
Bibliography 12
Introduction
While operating in healthcare organizations need to gather patient’s information that is mostly personal information. It is the moral and legal responsibility of health care organizations to protect the information of their patients and do not share it with people outside of the organization without the patient’s consent. Protecting patient’s information is a crucial element of respect and essential for patients' autonomy and trust in the organization — the US healthcare industry currently facing patient mistrust that is caused because of a lack of trust. When patients experience a lack of confidence they do not share their information with a healthcare professional that causes ineffective treatment. In a 2018 study, Levy, Scherer, Zikmund-Fisher, Larkin, Barnes, & Fagerlin concluded that approximately 81.1% of people withheld medically relevant information from their health-care providers. Patients fail to disclose medically relevant information in front of their clinicians undermine their health and cause patient harm (Levy, 2018).
There are numerous components of patient privacy in healthcare that are personal space, religious and cultural affiliations, physical privacy.
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Over-application of data and analytics in healthcare is alienating clinicians and, for the most part, not bending the cost-quality curves. This lecture spends 60% of the time on the softer issues, 40% on the technology.
Doctors 2.0: The New Physician-Patient Relationship, Pr. Arie Kruseman, NL
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“Innovative Solutions in Healthcare: Elevating Awareness and Communication”
In the dynamic landscape of healthcare, innovative solutions are playing a pivotal role in transforming how awareness is heightened and communication is enhanced. This article delves into the cutting-edge technologies and strategies that are reshaping the healthcare industry, ultimately improving the way information is disseminated and interactions take place.
Healthcare IT Trends
These are the slides from a talk I gave on healthcare IT trends to a group of local healthcare entrepreneurs and enthusiasts.
Chapter 13 The Evolving ePatientCopyright © 2014 by Mosby, a
Chapter 13
The Evolving ePatient
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
Historical Background and Drivers of the ePatient Evolution
ePatient as a pioneering concept
Technology, policy, and legislative influences
Characteristics of early and contemporary online healthcare consumers
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
2
The term epatient has its origins long before the advent of the Internet. It was coined in 1975 by a physician to describe a patient who is Equipped, Enabled, Empowered, and Engaged.
A number of factors converged to propel the epatient movement including access to the Internet and simplified search capability; policy initiatives focused on safety and quality in healthcare; passage of legislation to encourage widespread adoption of electronic medical records and health care reform legislation calling for patient-centered care and comparative effectiveness research.
People seeking health information online were categorized by their health status. The Well, the Newly Diagnosed, and the Chronically Ill and their caregivers often exhibit information-seeking behaviors based on these health states.
Studies show that 71% of adults seek information, care, and support from healthcare professionals, reinforcing the importance of collaboration.
Contemporary epatients continue to be characterized by their health status as identified in early online healthcare consumers. However, the contemporary epatient has access to a more interactive Internet environment known as Health 2.0.
Activist epatients are increasingly invited to participate in conferences targeting health professionals.
New tools for tracking and monitoring personal health metrics have given rise to the quantified self-movement.
2
ePatient as a Pioneering Concept
1960s: Computer-based, patient-driven medical interviews were conducted.
1975: Term epatient was coined.
1999: eHealth becomes a common term.
Today, eHealth remains a broad concept used to describe Internet or web-based activities that relate to healthcare, yet no consensus about the definition exists among researchers, policymakers, clinicians, or patients.
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
3
Technology, Policy, and Legislative Influences
Use of the Internet has had an unprecedented impact on access to information, sharing, and connectedness.
As of the first quarter of 2012, approximately 2.3 billion people worldwide were on the Internet, with nearly 8 new users being added every second.
Safety and quality flaws in the American healthcare system has led many to become vigilant advocates.
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
4
World Internet Usage
Copyright © 2014 by Mosby, an imprint of Elsevier Inc. All rights reserved.
5
Figure 13-1 from text.
5
Technology, Policy, and Legislative Influences (Cont.)
Patients should expect the following ...
Commodification of patient opinion
As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness and healthcare. The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in some cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research.
However what may not always be readily apparent to the users of these platforms are the growing commercial uses by many of the platforms’ owners of the archives of the data they contribute. This article examines this phenomenon of what I term ‘the digital patient experience economy’. In so doing I discuss such aspects as prosumption, the phenomena of big data and metric assemblages, the discourse and ethic of sharing and the commercialisation of affective labour via such platforms. I argue that via these online platforms patients’ opinions and experiences may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways.
The future of healthcare is digital
Presents a futuristic view based on development in health and medical data processing. the concept of and future of ePatient was discussed. The risks and limitations to digital medicine were presented.
Using technology-enabled social prescriptions to disrupt healthcare
As chronic diseases are increasingly straining healthcare systems, social factors are gaining importance. Since the birth of social medicine (19th century), we saw many failed attempts to beat the dominance of the biomedical model. Social prescriptions have come, raising hopes that non-biomedical solutions will improve outcomes and optimise resource use. Social Prescriptions connect citizens to support to address social determinants of health and encourage self-care for physical and mental health. Social prescriptions can make us healthier cheaper and with fewer side effects than most drugs. Social prescriptions can become a disruptive force as they can be personalised, improve lifestyle-related diseases, and support non-biomedical issues affected by social determinants of health.
Similar to [DigiHealth 22] Data Altruism, Web3, and Solving Bias in Medical Data - Dinidh O'Brien (20)
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Doctors 2.0: The New Physician-Patient Relationship, Pr. Arie Kruseman, NL
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Chapter 13 The Evolving ePatientCopyright © 2014 by Mosby, a
Chapter 13 The Evolving ePatientCopyright © 2014 by Mosby, a
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3、留学人员区块链存储服务
→ 【关于价格问题（保证一手价格）】
我们所定的价格是非常合理的，而且我们现在做得单子大多数都是代理和回头客户介绍的所以一般现在有新的单子 我给客户的都是第一手的代理价格，因为我想坦诚对待大家 不想跟大家在价格方面浪费时间
对于老客户或者被老客户介绍过来的朋友，我们都会适当给一些优惠。
选择实体注册公司办理，更放心，更安全！我们的承诺：客户在留信官方认证查询网站查询到认证通过结果后付款，不成功不收费！
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[DigiHealth 22] Data Altruism, Web3, and Solving Bias in Medical Data - Dinidh O'Brien
- 1. DATA ALTRUISM, WEB3, AND SOLVING BIAS IN MEDICAL DATA DINIDH O’BRIEN - HEAD OF PUBLIC RELATIONS DONATE YOUR DATA FOUNDATION & DATA LAKE
- 2. Recapping the problems of medical data 01 Medical data is often inaccessible to researchers. 02 Data represents a considerable financial burden to hospitals and clinics. 03 There is significant bias and lack of representation in datasets. 04 There is no digital system for informed consent from donors; legal and regulatory uncertainty and knowledge gap.
- 3. What’s at stake? 01 Sci-Fi level of all-in-one medical scanning, diagnosis and prescription/treatment technologies. 02 Unlocking the cures and treatments to many diseases, and improving both treatments and patient outcomes. 03 The success of Artificial Intelligence and Machine Learning in healthcare. 04 Most importantly: saving millions of lives per year.
- 4. Progress in modern medicine is wholly dependent on access to high- quality and representative medical data. It is considered a strategic national resource by most world governments, and improving medical data systems and sharing is a stated UN Health Council goal.
- 5. The Data Zeitgeist 01 People are increasingly fed up with Big Tech. 02 People are becoming more aware of the importance of their data & privacy. 03 People are starting to understand the value of their data. 04 The always-online generation are now adults and far more open to new technologies.
- 6. Combining data altruism, web3 technologies, and the data zeitgeist to solve one of the most pressing issues in science: Introducing - Incentive- based Medical Data Donation
- 7. Incentive-Based Data Altruism How it works Consent-based donation of medical data by patients through a network of hospitals, clinics, media and key opinion leaders. 01 03 Network of altruistic “Trust Entities” in the form of non-profit foundations, funded by stakeholder rewards and who are legally responsible for proper usage of donated data. 02 A rewards system that incentivizes participation of all stakeholders, driven by the proceeds of real-life data sales.
- 8. Why web3? 01 Trustless, Transparent Provenance Public blockchains are quickly becoming institutionally accept when it comes to the need for transparent, truthful repositories of information. 02 Incentivization and Rewards are International by Default Anyone in the world can participate in the data economy and be rewarded, which means broader and more representative datasets! 03 Aligned stakeholder interests It enables us to build democratic data economy which increases in value when donors are rewarded, not just when big players are profitable.
- 9. Data innovation, privacy, and individual rights CAN coexist.