Health, Care, Technology and Regulation 2019-2020
Course structure
- 6 weeks
- 6 lectures
- 6 tutorials
- March 10th
- March 12th
- Final paper
o Resit
Discussion Group 1
- No mandatory attendance
- Group presentation 40% à one health technology
- Final Paper 60% à multi-disciplinary, cannot be the exact same as the presentation (bibl. Is
excluded) needs to be more academically-minded
o Footnotes only as reference, than excluded à if arguments then excluded
Course outline
Health is one aspect of life that at some time or another affects us all. We all have been, are, or will at
some point be, in contact with various parts of healthcare systems – either directly for ourselves or
indirectly for a family member or loved one. Due to the need to protect individuals when they are part
of this system, care – and thereby the technologies that are part of care processes – has long been
tightly regulated. The sector has highly delineated industry standards and guidelines for practice.
However, (national) health systems are increasingly under stress and turn to emerging technologies
as potential solutions to the various problems that come up. Yet, uptake of these technologies in
healthcare is often several years behind other sectors and many popular applications are implemented
into health practices from outside the health arena through commercial "push." The use of such
technologies therefore raises multiple questions of governance: they disrupt practice, often contradict
established (professional) norms and significantly outpace regulatory control.
This course therefore examines these regulatory challenges and questions of technological
governance using a multi-disciplinary approach. We draw on insights from Science & Technology
Studies (ST), law, ethics, medical informatics and sociology to tease out the intricacies of regulating
health technologies.
Upon completing this course, students are able to:
• Identify different levels and types of healthcare, and models for financing this care, and
explain why these distinctions are important in the context of regulating health technologies
• Identify and explain the fundamental principles underlying health law and relate these to
technological regulation
• Explain reasons contributing to the difficulty of regulating emerging technologies in their
healthcare and health-related contexts from a legal, ethical, and sociological perspective
• Explain what is meant by social constructions of health and reflect on technology as
simultaneously an instrument of behavioural governance and entity to be governed
• Conduct a multi-disciplinary analysis of an emergent technology application that identifies
regulatory/governance challenges and proposes potential solutions to those challenges
,Lecture 1 - Introduction to the primary concepts: health, care, technology and regulation
Literature Week 1
Recommended Reading:
Hull, G. 2015. ‘Successful failure: What Foucault Can Teach us About Privacy Self-Management in a
World of Facebook and Big Data’ Ethics and Information Technology 17(2) à
https://link.springer.com/article/10.1007/s10676-015-9363-z
Mandatory reading:
(1) Docherty A. 2014. 'Big Data - Ethical Perspectives' Anaesthesia 69.
http://onlinelibrary.wiley.com/doi/10.1111/anae.12656/full
Having health records saved in a large database (Big Data) could have some consequences. Even if
the people have been anonymized. There is still a risk of backtracking this data. The benefits are:
quick improvements in healing others and finding new affordable health care. However, ethics must be
incorporated in balancing these possible benefits against potential harms.
2 ethical areas of concern:
1. Vulnerable groups may become stigmatized
2. Treated as a means to an end, and not the end themselves
Even if the aim is to help, the information could be used to discriminate against them. Retained
identifiers such as postcodes can lead to disease burdens linked to geographical or socio-economic
deprivations.
Personal autonomy is recognized and protected by providing consent. However, Data protection act of
1998 states that consent is not needed for anonymized data and that seeking consent from the people
could cause harm (selection, recruitment and participation bias). Also timely and costly and would
prohibit large studies. Moreover, the person who asks is unlikely to know all the natures of the
research in the future, which would require re-consent etcetera.
However, non-consensual use of even anonymous data can risk the relationship between patient and
professionals.
NHS: an opt-out option, all patients using NHS services are provided with information about how data
will be used. However, public engagement and awareness is crucial to maintain personal autonomy.
(2) Lupton D. 2014. ‘Health Promotion in the Digital Era: A Critical Commentary’ Health
Promotion International 30(1) https://academic.oup.com/heapro/article/30/1/174/2805780
This article provides a critical commentary on digitized health promotion.
- Overview of the types of digital technologies used for health promotion
- Discussion of the socio-political implications of such use
Introduction
Outline of a research for an invasive “fit” program, with monitoring devices that kept track of
everything. However, despite this research it has now become our reality.
Digitized health promotion
Web 1.0 and Web 2.0. Second one also means the “social” web. Web 2.0 is characterized by the
activities of the ‘prosumers’ of online technologies, or users who both produce and consume digital
content. Web 3.0 – Internet of things is coming soon. This means the interconnectedness of smart
objects, which will pass on data continuously and without human intervention.
These pervasive digital technologies that we now have, have also turned to health care. Not only
information can be accessed on the web or apps, also sensors, monitors etcetera play a role. All
together it is called Digital Health. Some are voluntary; some could serve broader purposes of
organizations, agencies both corporate and governmental.
, Big Data
The opportunity to collect large masses of digital data by accessing digital patient records and other
health informatics and harvesting search engine queries and social media content is viewed as having
great potential for producing new knowledge about illness and disease and contributing to preventive
medicine and health promotion.
Socio-political implications of digitalizing health promotion
It is paramount to investigate and identify the social and political issues that emerge, including the
ramifications for social groups who are already socioeconomically disadvantaged, have disabilities or
suffer poor health.
The current programs are extremely individualized; they do not focus on larger social disadvantages
etcetera.
What are the ethical implications of these ways of generating and combining data on people and who
will have access to these data?
- When does encouragement become coercion? When insurers and corporate entities come
into play?
- For example, lower premiums to those who participate? That’s financial coercion.
- It all tends to conform to a paternalistic top-down approach
- The people involved do not choose the objective
- Digitized health promotion that seeks to move away from changing individual behaviour to
broader initiatives such as community development and challenging the political status quo
remains in the minority
Conclusion
Future digitized health promotion may involve investigating alternatives to the dominant
commercialized social media platforms that may provide better options for data security and privacy
and for people and communities to own and control their personal data. All of these investigations
require a sophisticated understanding of the complexities and power relations of the technologies that
configure digital society.
Course structure
- 6 weeks
- 6 lectures
- 6 tutorials
- March 10th
- March 12th
- Final paper
o Resit
Discussion Group 1
- No mandatory attendance
- Group presentation 40% à one health technology
- Final Paper 60% à multi-disciplinary, cannot be the exact same as the presentation (bibl. Is
excluded) needs to be more academically-minded
o Footnotes only as reference, than excluded à if arguments then excluded
Course outline
Health is one aspect of life that at some time or another affects us all. We all have been, are, or will at
some point be, in contact with various parts of healthcare systems – either directly for ourselves or
indirectly for a family member or loved one. Due to the need to protect individuals when they are part
of this system, care – and thereby the technologies that are part of care processes – has long been
tightly regulated. The sector has highly delineated industry standards and guidelines for practice.
However, (national) health systems are increasingly under stress and turn to emerging technologies
as potential solutions to the various problems that come up. Yet, uptake of these technologies in
healthcare is often several years behind other sectors and many popular applications are implemented
into health practices from outside the health arena through commercial "push." The use of such
technologies therefore raises multiple questions of governance: they disrupt practice, often contradict
established (professional) norms and significantly outpace regulatory control.
This course therefore examines these regulatory challenges and questions of technological
governance using a multi-disciplinary approach. We draw on insights from Science & Technology
Studies (ST), law, ethics, medical informatics and sociology to tease out the intricacies of regulating
health technologies.
Upon completing this course, students are able to:
• Identify different levels and types of healthcare, and models for financing this care, and
explain why these distinctions are important in the context of regulating health technologies
• Identify and explain the fundamental principles underlying health law and relate these to
technological regulation
• Explain reasons contributing to the difficulty of regulating emerging technologies in their
healthcare and health-related contexts from a legal, ethical, and sociological perspective
• Explain what is meant by social constructions of health and reflect on technology as
simultaneously an instrument of behavioural governance and entity to be governed
• Conduct a multi-disciplinary analysis of an emergent technology application that identifies
regulatory/governance challenges and proposes potential solutions to those challenges
,Lecture 1 - Introduction to the primary concepts: health, care, technology and regulation
Literature Week 1
Recommended Reading:
Hull, G. 2015. ‘Successful failure: What Foucault Can Teach us About Privacy Self-Management in a
World of Facebook and Big Data’ Ethics and Information Technology 17(2) à
https://link.springer.com/article/10.1007/s10676-015-9363-z
Mandatory reading:
(1) Docherty A. 2014. 'Big Data - Ethical Perspectives' Anaesthesia 69.
http://onlinelibrary.wiley.com/doi/10.1111/anae.12656/full
Having health records saved in a large database (Big Data) could have some consequences. Even if
the people have been anonymized. There is still a risk of backtracking this data. The benefits are:
quick improvements in healing others and finding new affordable health care. However, ethics must be
incorporated in balancing these possible benefits against potential harms.
2 ethical areas of concern:
1. Vulnerable groups may become stigmatized
2. Treated as a means to an end, and not the end themselves
Even if the aim is to help, the information could be used to discriminate against them. Retained
identifiers such as postcodes can lead to disease burdens linked to geographical or socio-economic
deprivations.
Personal autonomy is recognized and protected by providing consent. However, Data protection act of
1998 states that consent is not needed for anonymized data and that seeking consent from the people
could cause harm (selection, recruitment and participation bias). Also timely and costly and would
prohibit large studies. Moreover, the person who asks is unlikely to know all the natures of the
research in the future, which would require re-consent etcetera.
However, non-consensual use of even anonymous data can risk the relationship between patient and
professionals.
NHS: an opt-out option, all patients using NHS services are provided with information about how data
will be used. However, public engagement and awareness is crucial to maintain personal autonomy.
(2) Lupton D. 2014. ‘Health Promotion in the Digital Era: A Critical Commentary’ Health
Promotion International 30(1) https://academic.oup.com/heapro/article/30/1/174/2805780
This article provides a critical commentary on digitized health promotion.
- Overview of the types of digital technologies used for health promotion
- Discussion of the socio-political implications of such use
Introduction
Outline of a research for an invasive “fit” program, with monitoring devices that kept track of
everything. However, despite this research it has now become our reality.
Digitized health promotion
Web 1.0 and Web 2.0. Second one also means the “social” web. Web 2.0 is characterized by the
activities of the ‘prosumers’ of online technologies, or users who both produce and consume digital
content. Web 3.0 – Internet of things is coming soon. This means the interconnectedness of smart
objects, which will pass on data continuously and without human intervention.
These pervasive digital technologies that we now have, have also turned to health care. Not only
information can be accessed on the web or apps, also sensors, monitors etcetera play a role. All
together it is called Digital Health. Some are voluntary; some could serve broader purposes of
organizations, agencies both corporate and governmental.
, Big Data
The opportunity to collect large masses of digital data by accessing digital patient records and other
health informatics and harvesting search engine queries and social media content is viewed as having
great potential for producing new knowledge about illness and disease and contributing to preventive
medicine and health promotion.
Socio-political implications of digitalizing health promotion
It is paramount to investigate and identify the social and political issues that emerge, including the
ramifications for social groups who are already socioeconomically disadvantaged, have disabilities or
suffer poor health.
The current programs are extremely individualized; they do not focus on larger social disadvantages
etcetera.
What are the ethical implications of these ways of generating and combining data on people and who
will have access to these data?
- When does encouragement become coercion? When insurers and corporate entities come
into play?
- For example, lower premiums to those who participate? That’s financial coercion.
- It all tends to conform to a paternalistic top-down approach
- The people involved do not choose the objective
- Digitized health promotion that seeks to move away from changing individual behaviour to
broader initiatives such as community development and challenging the political status quo
remains in the minority
Conclusion
Future digitized health promotion may involve investigating alternatives to the dominant
commercialized social media platforms that may provide better options for data security and privacy
and for people and communities to own and control their personal data. All of these investigations
require a sophisticated understanding of the complexities and power relations of the technologies that
configure digital society.
