Ethical aspects in eHealth – design of a privacy-friendly system
| Pages | 49-69 |
| Published date | 14 March 2016 |
| DOI | https://doi.org/10.1108/JICES-06-2014-0028 |
| Date | 14 March 2016 |
| Author | Milica Milutinovic,Bart De Decker |
| Subject Matter | Information & knowledge management,Information management & governance |
Ethical aspects in
eHealth – design of a
privacy-friendly system
Milica Milutinovic and Bart De Decker
Department of Computer Science, KU Leuven, Leuven, Belgium
Abstract
Purpose – The medical advances and historical uctuations in the demographics are contributing to
the rise of the average age. These changes are increasing the pressure to organize adequate care to a
growing number of individuals. As a way to provide efcient and cost-effective care, eHealth systems
are gaining importance. However, this trend is creating new ethical concerns. Major issues are privacy
and patients’ control over their data. To deploy these systems on a large scale, they need to offer strict
privacy protection. Even though many research proposals focus on eHealth systems and related ethical
requirements, there is an evident lack of practical solutions for protecting users’ personal information.
The purpose of this study is to explore the ethical considerations related to these systems and extract
the privacy requirements. This paper also aims to put forth a system design which ensures appropriate
privacy protection.
Design/methodology/approach – This paper investigates the existing work in the area of eHealth
systems and the related ethical considerations, which establish privacy as one of the main requirements.
It lists the ethical requirements and data protection standards that a system needs to full and uses
them as a guideline for creating the proposed design.
Findings – Even though privacy is considered to be a paramount aspect of the eHealth systems, the
existing proposals do not tackle this issue from the outset of the design. Consequently, introducing
privacy at the nal stages of the system deployment imposes signicant limitations and the provided
data protection is not always to the standards expected by the users.
Originality/value – This paper motivates the need for addressing ethical concerns in the eHealth
domain with special focus on establishing strict privacy protection. It lists the privacy requirements and
offers practical solutions for developing a privacy-friendly system and takes the approach of
privacy-by-design. Additionally, the proposed design is evaluated against ethical principles as
proposed in the existing literature. The aim is to show that technological advances can be used to
improve quality and efciency of care, while the usually raised concerns can be avoided.
Keywords Ethics, Patient-centric approach, Privacy, E-Health
Paper type Research paper
1. Introduction
The advances in the eld of medicine and the historical uctuations in the demographics
are contributing to the increase of the average age of individuals in the Western world.
The life expectancy is also experiencing a continuous rise. Consequently, an increasing
number of individuals require some form of medical care or assistance. These changes
are creating a growing pressure on the government’s social security or on other
insurance companies, as the costs for appropriate care provisioning are increasing.
This work was partially funded by the Mobile Companion (MobCom) project: www.mobcom.org
The current issue and full text archive of this journal is available on Emerald Insight at:
www.emeraldinsight.com/1477-996X.htm
Ethical
aspects in
eHealth
49
Received 8 June 2014
Revised 27 November 2014
26 January 2015
Accepted 5 February 2015
Journalof Information,
Communicationand Ethics in
Society
Vol.14 No. 1, 2016
pp.49-69
©Emerald Group Publishing Limited
1477-996X
DOI 10.1108/JICES-06-2014-0028
Additionally, as the elderly are often not comfortable with moving to the nursing homes
or hospitals and wish to stay at their homes for as long as possible, home care needs to
be offered. Currently, the non-medical assistance is performed by the guardians of the
elderly, who are most often immediate family members. However, the limited birth rate
in the recent decades is creating a greying population. The number of available family
members that could provide such assistance is therefore becoming increasingly limited.
Additionally, the care provisioning comprises a range of aspects, making the
requirements and responsibilities of the guardians all the more demanding. On the one
hand, the daily tasks need to be provisioned, such as catering or cleaning, but also social
contact and companionship. However, organizing care that requires trained personnel,
such as nurses, GPs or specialists, is also essential. To decrease the responsibilities of
the guardians and to additionally integrate different aspects of the home assistance,
eHealth systems are widely considered and extensively researched. They allow the
monitoring of the elderly, or patients recovering at home, and possibly provide means of
communication with them.
Even though the eHealth solutions have a great potential and provide valuable
opportunities for solving the aforementioned problems, the research in this area has not
yet fully tackled the accompanying ethical issues. As eHealth systems encompass a new
form of communication with the caregivers and management of patients’
(health-related) data, the ethical considerations that exist for the traditional healthcare
are not sufcient. On the one hand, these changes are advancing the quality of care by
offering quick access to most recent health data, possibility of remote check-up and
avoiding repeated analyses. On the other hand, new concerns are created related to
aspects such as appropriate protection of patient’s data and sustentation of the patient–
caregiver relationship.
The issue that we focus on in this paper is the protection of patients’ data and their
privacy. As these systems perform monitoring and manage health-related information,
the protection of data and access control are of major importance. To provide assistance
to the elderly or patients, communication with the caregivers has to be ensured. This
means that caregivers’ personal information, such as contact data, needs to be handled
by the system. However, knowing a caregiver of a patient can already reveal sensitive
medical information about the patient. For instance, knowing which specialist is
treating a patient usually allows inferring the medical condition in question. This is one
of the examples that illustrates the need to tackle the privacy issues, so these systems
can become widely adopted and deployed.
To address the aforementioned problems, we propose a exible system design which
would allow for care provisioning at the patient’s home. Additionally, we also aim to
offer the patients to connect to their known caregivers and ensure accountability of the
actors. The design is deployed with ethical principles in mind, while encompassing
practical properties of a diverse system. Services that can be incorporated are health
monitoring, connecting the patient to her regular caregivers and family members and
commercial services of external providers. We describe the accompanying set of
privacy-preserving protocols that would protect the data of the users of the eHealth
system, both patients and their caregivers, but would at the same time ensure that
necessary data are made available to appropriate care-provisioning entities. What is
also important, the described mechanism for privacy protection does not impose
limitations on the number of services, or the quality of care that the system offers.
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