Health Data Dilemmas: Ethical Benefits and Risks: (Data Ethics, AI and Responsible Innovation)

Claudia Pagliari

Health Data Dilemmas: Ethical Benefits and Risks: (Data Ethics, AI and Responsible Innovation)

Research output: Non-textual form › Digital or Visual Products

Abstract / Description of output

In this Open Access video Dr Claudia Pagliari discusses some of the ways in which data about our health is being collected and utilised, the benefits and risks this can bring for individuals and society, and the ethical dilemmas this presents. For example, health data may be used to inform better clinical decisions, understand the spread of disease in populations, spot drug side-effects, or target services to those who most need them. But it can also be highly sensitive, may predict other aspects of our lives, is vulnerable to misuse in the wrong hands and can be politically controversial. Claudia discusses the critical importance of public trust and good governance for enabling the responsible use of health data, and highlights a range of associated issues, including the rise of commercial data brokers, the challenge of 'anonymisation', how scientific timelines can make it difficult to demonstrate public benefit, and the influence of social inequalities on the 'digital privacy divide'. While the video mainly focuses on the use of data generated when we interact with healthcare institutions, Claudia points out that data about our health and wellbeing is also being captured from the 'exhaust trails' we leave behind when using digital tools and services in our daily lives, which may be harder to monitor and regulate.

Original language	English
Publisher	The University of Edinburgh
Media of output	Online
Publication status	Published - 19 Dec 2019

Keywords / Materials (for Non-textual outputs)

Data Ethics
Digital Health
Medical Informatics
eHealth
Digital Ethics
Data Science
Bioethics
Big Data

Access to Document

https://media.ed.ac.uk/media/Ethical+Benefits+and+Risks+of+Health+Data+Usage/0_0gw4mem7Licence: Creative Commons: Attribution-NonCommercial-ShareAlike (CC BY-NC-SA)

1 Finished

The role of Good- Governance and the Rule of Law in Building Trust in Data-Driven Responses to Public Health Emergencies
Pagliari, C.
1/02/21 → 1/12/21
Project: Research

A Public Health Research Agenda for Managing Infodemics: Methods and Results of the First WHO Infodemiology Conference
Calleja, N., Abdallah, A., Abad, N., Ahmed, N., Albarracin, D., Altieri, E., Anoko, J. N., Arcos, R., Azlan, A. A., Bayer, J., Bechmann, A., Bezbaruah, S., Briand, S. C., Brooks, I., Bucci, L. M., Burzo, S., Czerniak, C., De Domenico, M., Dunn, A. G., Ecker, U. K. H., & 52 othersEspinosa, L., Francois, C., Gradon, K., Gruzd, A., Gülgün, B. S., Haydarov, R., Hurley, C., Astuti, S. I., Ishizumi, A., Johnson, N., Johnson Restrepo, D., Kajimoto, M., Koyuncu, A., Kulkarni, S., Lamichhane, J., Lewis, R., Mahajan, A., Mandil, A., Mcaweeney, E., Messer, M., Moy, W., Ndumbi Ngamala, P., Nguyen, T., Nunn, M., Omer, S. B., Pagliari, C., Patel, P., Phuong, L., Prybylski, D., Rashidian, A., Rempel, E., Rubinelli, S., Sacco, P., Schneider, A., Shu, K., Smith, M., Sufehmi, H., Tangcharoensathien, V., Terry, R., Thacker, N., Trewinnard, T., Turner, S., Tworek, H., Uakkas, S., Vraga, E., Wardle, C., Wasserman, H., Wilhelm, E., Würz, A., Yau, B., Zhou, L. & Purnat, T. D., 15 Sept 2021, In: JMIR Infodemiology. 1, 1, p. e30979
Research output: Contribution to journal › Article › peer-review

Open Access
How the digital healthcare revolution leaves the most vulnerable behind
Ali, O., Dalgarno, E., Pagliari, C. & Verma, A., 1 Aug 2021, Policy@Manchester.
Research output: Other contribution

Open Access
Digitally-enabled primary care: Past, present and prospects
Pagliari, C., 2 Jul 2021, In: Journal of Global Health. 11, 01005, p. 1-9 9 p., 01005.
Research output: Contribution to journal › Article › peer-review

Open Access
File

The many faces of inequality in a digitised world: thoughts on deprivation devices, data, deception, disruption and dialogue.
Claudia Pagliari (Invited speaker)
11 May 2022
Activity: Academic talk or presentation types › Invited talk
Balancing Hype and Reality in Medical AI. What Evidence-Based Medicine has to offer for a useful, sustainable and fair digital health future
Claudia Pagliari (Invited speaker)
25 Sept 2021
Activity: Academic talk or presentation types › Invited talk
Vaccine passports, digital identity and the global implications of health data sharing
Claudia Pagliari (Invited speaker) & Phil Booth (Invited speaker)
10 May 2021
Activity: Academic talk or presentation types › Invited talk

Cite this

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title = "Health Data Dilemmas: Ethical Benefits and Risks: (Data Ethics, AI and Responsible Innovation)",

abstract = "In this Open Access video Dr Claudia Pagliari discusses some of the ways in which data about our health is being collected and utilised, the benefits and risks this can bring for individuals and society, and the ethical dilemmas this presents. For example, health data may be used to inform better clinical decisions, understand the spread of disease in populations, spot drug side-effects, or target services to those who most need them. But it can also be highly sensitive, may predict other aspects of our lives, is vulnerable to misuse in the wrong hands and can be politically controversial. Claudia discusses the critical importance of public trust and good governance for enabling the responsible use of health data, and highlights a range of associated issues, including the rise of commercial data brokers, the challenge of 'anonymisation', how scientific timelines can make it difficult to demonstrate public benefit, and the influence of social inequalities on the 'digital privacy divide'. While the video mainly focuses on the use of data generated when we interact with healthcare institutions, Claudia points out that data about our health and wellbeing is also being captured from the 'exhaust trails' we leave behind when using digital tools and services in our daily lives, which may be harder to monitor and regulate.",

keywords = "Data Ethics, Digital Health, Medical Informatics, eHealth, Digital Ethics, Data Science, Bioethics, Big Data",

author = "Claudia Pagliari",

note = "Dr Claudia Pagliari leads the eHealth Interdisciplinary Research Group at the University of Edinburgh. She has been involved in the study of data and digital ethics for over 15 years, having been a co-investigator on the Scottish Health Informatics programme and the Administrative Data Research. She has also worked extensively on digital ethics applied to technologies such as consumer genetic testing, personalised medicine, medical apps, social robots, social media data mining, and integrated care systems. She co-founded and led the MSc in Health Informatics with the Royal College of Surgeons of Edinburgh (2007-14) the MSc in Global eHealth (2014-20) and the NHS Digital Academy (2018-). In this context she has developed and led courses in a range of health informatics topics, including Global eHealth, Public Health Informatics, Citizen-centred eHealth and The Ethics and Governance of eHealth. She is also a visiting lecturer in digital health ethics at Imperial College London, University College London and the Open University. She is a member of the World Health Organisation's Roster of Experts in Digital Health and an Advisor and Expert Group chair for the Scottish Government in Digital Ethics. This video was recorded as part of a pan-university series on the ethics of data and artificial intelligence organised by the Data Lab and Edinburgh Futures Institute, in which Claudia leads the health theme.",

year = "2019",

month = dec,

day = "19",

language = "English",

publisher = "The University of Edinburgh",

}

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T1 - Health Data Dilemmas: Ethical Benefits and Risks

T2 - (Data Ethics, AI and Responsible Innovation)

AU - Pagliari, Claudia

N1 - Dr Claudia Pagliari leads the eHealth Interdisciplinary Research Group at the University of Edinburgh. She has been involved in the study of data and digital ethics for over 15 years, having been a co-investigator on the Scottish Health Informatics programme and the Administrative Data Research. She has also worked extensively on digital ethics applied to technologies such as consumer genetic testing, personalised medicine, medical apps, social robots, social media data mining, and integrated care systems. She co-founded and led the MSc in Health Informatics with the Royal College of Surgeons of Edinburgh (2007-14) the MSc in Global eHealth (2014-20) and the NHS Digital Academy (2018-). In this context she has developed and led courses in a range of health informatics topics, including Global eHealth, Public Health Informatics, Citizen-centred eHealth and The Ethics and Governance of eHealth. She is also a visiting lecturer in digital health ethics at Imperial College London, University College London and the Open University. She is a member of the World Health Organisation's Roster of Experts in Digital Health and an Advisor and Expert Group chair for the Scottish Government in Digital Ethics. This video was recorded as part of a pan-university series on the ethics of data and artificial intelligence organised by the Data Lab and Edinburgh Futures Institute, in which Claudia leads the health theme.

PY - 2019/12/19

Y1 - 2019/12/19

N2 - In this Open Access video Dr Claudia Pagliari discusses some of the ways in which data about our health is being collected and utilised, the benefits and risks this can bring for individuals and society, and the ethical dilemmas this presents. For example, health data may be used to inform better clinical decisions, understand the spread of disease in populations, spot drug side-effects, or target services to those who most need them. But it can also be highly sensitive, may predict other aspects of our lives, is vulnerable to misuse in the wrong hands and can be politically controversial. Claudia discusses the critical importance of public trust and good governance for enabling the responsible use of health data, and highlights a range of associated issues, including the rise of commercial data brokers, the challenge of 'anonymisation', how scientific timelines can make it difficult to demonstrate public benefit, and the influence of social inequalities on the 'digital privacy divide'. While the video mainly focuses on the use of data generated when we interact with healthcare institutions, Claudia points out that data about our health and wellbeing is also being captured from the 'exhaust trails' we leave behind when using digital tools and services in our daily lives, which may be harder to monitor and regulate.

AB - In this Open Access video Dr Claudia Pagliari discusses some of the ways in which data about our health is being collected and utilised, the benefits and risks this can bring for individuals and society, and the ethical dilemmas this presents. For example, health data may be used to inform better clinical decisions, understand the spread of disease in populations, spot drug side-effects, or target services to those who most need them. But it can also be highly sensitive, may predict other aspects of our lives, is vulnerable to misuse in the wrong hands and can be politically controversial. Claudia discusses the critical importance of public trust and good governance for enabling the responsible use of health data, and highlights a range of associated issues, including the rise of commercial data brokers, the challenge of 'anonymisation', how scientific timelines can make it difficult to demonstrate public benefit, and the influence of social inequalities on the 'digital privacy divide'. While the video mainly focuses on the use of data generated when we interact with healthcare institutions, Claudia points out that data about our health and wellbeing is also being captured from the 'exhaust trails' we leave behind when using digital tools and services in our daily lives, which may be harder to monitor and regulate.

KW - Data Ethics

KW - Digital Health

KW - Medical Informatics

KW - eHealth

KW - Digital Ethics

KW - Data Science

KW - Bioethics

KW - Big Data

M3 - Digital or Visual Products

PB - The University of Edinburgh

ER -

Health Data Dilemmas: Ethical Benefits and Risks: (Data Ethics, AI and Responsible Innovation)

Abstract / Description of output

Keywords / Materials (for Non-textual outputs)

Access to Document

Fingerprint

Projects

The role of Good- Governance and the Rule of Law in Building Trust in Data-Driven Responses to Public Health Emergencies

Research output

A Public Health Research Agenda for Managing Infodemics: Methods and Results of the First WHO Infodemiology Conference

How the digital healthcare revolution leaves the most vulnerable behind

Digitally-enabled primary care: Past, present and prospects

Activities

The many faces of inequality in a digitised world: thoughts on deprivation devices, data, deception, disruption and dialogue.

Balancing Hype and Reality in Medical AI. What Evidence-Based Medicine has to offer for a useful, sustainable and fair digital health future

Vaccine passports, digital identity and the global implications of health data sharing

Cite this