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Protecting Patient Privacy when Sharing Medical Data
Stefan Benzschawel
CR SANTEC - Public Research Center Henri Tudor
Luxembourg-Kirchberg, Luxembourg
stefan.benzschawel@tudor.lu
Marcos Da Silveira
CR SANTEC - Public Research Center Henri Tudor
Luxembourg-Kirchberg, Luxembourg
marcos.dasilveira@tudor.lu
Abstract— This paper describes a national eHealth platform
concept with a multi-level privacy protection in order to
improve the security and privacy of medical information on
their storage locations as well as during the
exchanging/sharing processes. The key idea is to classify and
split-up data into different servers. A Trusted Third Party
server manages personal identifying data together with the
related pseudonyms while the medical information server
manages the related medical data assigned to pseudonyms. The
well known IHE-XDS profiles are enriched by Public Key
Infrastructure, symmetric and asymmetric encryption together
with pseudonymization methods. IHE-XDS promote the
interoperability level and the extensions increase the security
level.
Keywords— eHealth; Patient Privacy; Electronic Health
Records; Secure Patient Data Storage
I. INTRODUCTION
Healthcare technologies are moving from isolated and
autonomous solutions to more interoperable ones. The main
expectations of this change are to provide better ways to
exchange and share medical information and to improve the
quality of services offered to the patients.
In this context, medical data is supposed to be available
online where healthcare professionals can access it at any
time and from any place. Basically, it will be transmitted
over Internet, dedicated Virtual Private Networks (VPN),
and hospital networks. The on-line access to medical
information can have two major consequences: it can
support healthcare professional to take better decisions; it
can increase the risk of loss of privacy and malicious
attacks. The goal of designing and implementing eHealth
platforms is to reinforce the former consequence and to
reduce or eliminate the second one. This paper focuses on
the strategy to widely reduce the malicious attacks’ risk and
to assure the privacy of patients during the storing and
exchange (sharing) of medical information by using the
eHealth platform.
Some cryptographic protocols have proved their
efficiency to provide data-security for communications over
networks but they do not fully prevent attacks to users’
computers or servers. An eHealth platform has to deal with
these risks, control authentication, authorization, and
integrity. Several countries are implementing different
solutions to satisfy these needs, but the evolution of the
applications, methods and laws had forced some of them to
review partially or completely their approaches.
The terms “central” and “decentral” mostly refer to the
location of the information repositories. In enlarging this
interpretation towards different components of a system, the
term “central” refers to a system where the components are
in one location, managed by one staff of administrators. The
term “decentral” then refers to a distributed system. The
security advantage of decentral systems is that an attacker
will get only a part of the stored information. The
disadvantage is that the components (satellites) of the
distributed system may not be protected in the same “best”
way, as one can do for a centralized system.
The proposed solution respects both aspects – (1) avoid a
single attack point and (2) data-security for the satellites'
data. If the information stored in one satellite is unusable for
an attacker as long as information from other satellites is
missing, thus the hacked information of one satellite is
worthless alone. This paper describes a secure IT-platform
based on this idea. It protects the stored information against
external intruder attacks as well as against internal
administrator attacks. The layout is based on the IHE-XDS
[1] profile, extended with pseudonymization, encryption,
and signature functionalities.
Patients' data are distributed within the system in two
main parts: One for storing the medical information under
pseudonyms and the other for mapping the pseudonyms to
the patients' identity data. The benefit is: if one part of data
is stolen, the information is useless. Neither the mapping
table nor the medical database with pseudonyms is really
useful alone.
In the case where medical data contains additional person
identifying information, like a name printed on an X-ray
picture, then the medical data (i.e., the X-ray) is encrypted
and stored under a pseudonym.
The access to the stored information is realized with a
web application. As the web-server in the Internet is a high
security risk, the patient's identifying data are hidden against
the web-server. Illegal server logs on the web-server are
useless. Also to avoid illegal web-server logs, the
transferred medical results are encrypted on their way over
the web-server.
The platform is protected against unauthorized access by
multiple security levels. The initial login is done with a
108Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine
personal ID-card. A user&role directory guards the legal
access to the system.
Finally, an elaborated consent management protects any
undesired access on the base of the patients' will. The
special case of an information access during an emergency
situation of the patient implies sending an information about
the data access to the patient, his family doctor or any other
named contact person.
In the next section, some related works are shortly
presented and discussed. Section III introduces the
architectural approach.
II. RELATED WORK
Data stored in and transmitted through an Internet-based
platform are confronted with a set of attack possibilities. In
health care domain, medical data and personal data can be
exchanged and managed by services provided in a platform.
It also includes privacy and data protection. Patients want to
be sure that their personal and medical information is not
misused. They want to know how their data is utilized,
disclosed, and protected, and the degree of control they will
have over the dissemination of this information. They are
also worried about possible undesirable economic and social
consequences from the misuse of such information [2][3].
Users of healthcare services are unwilling to have their
personal information distributed other than for purposes of
clinical care and they would like to be consulted before their
information is released. The right to decide which personal
information can be communicated to others and under
which conditions constitutes their privacy rights and need to
be implemented in the platform system. Assuring privacy
implies that the platform needs to deal with, at least two
attack risks eavesdropper and server intruders or curious
insiders [4]. Three potential types of attackers are described
in [4]: Client intruder, which attack the client computer
(e.g., trojan); Eavesdropper, which compromise or owns a
subset of communication’s nodes to collect and analyze
messages that are routed over them; Curious insider or
server intruder, this attackers have administrative privileges
and can access all data in the server.
For the client intruders’ risk, we assume that users are
responsible for the protection of their own system and of
data saved in their computer. The access to the platform is
protected by a system based on the electronic cards that
provides identification and signature services. If an intruder
steals the identity of the user he will need to have his card
and know his password to use the platform. Other countries
have also adopted electronic cards for health data
management and patient identification (eCard in Austria[5],
eGK in Germany[6], Vitale in France[7], etc), this type of
card has shown its efficacy in banking domain and are
widely accepted by users.
The other two types of attacks are directly related to the
security strategy of the platform. Cryptography (e.g., Public
Key Infrastructure) is commonly used in eHealth platforms
to avoid eavesdropper, however a communication protocol
should be defined to avoid that encrypted data and
decryption keys cross the same node without a specific
protection. The Belgium platform deals with this problem
by implementing an end-to-end communication [8], then the
private key is expected to never leaves the client computer.
However, this solution does not allow sharing data when the
receiver is unknown. For example, a prescription cannot be
accessed by a pharmacy if the pharmacy was not chose by
patient/doctor at the moment of the e-prescription creation.
In Luxembourg [9], the eHealth platform has been
designed to store (temporarily) medical data, and users will
be able to access this data. In this case, the information
cannot be encrypted with the public key of the (unknown)
receiver and saving unencrypted data will open a door for
server intruders or curious insiders attacks. The protocol
proposed in this paper deals with this situation using
symmetric encryption associated to asymmetric encryption
for the symmetric keys [10], an identity and role control
system and a pseudonymization of unencrypted data [11].
This encryption technologies are well known by Network
administrators, however, associating it with
pseudonymization techniques are not usual, as much as we
know the proposed solutions use proprietary message
structures. As semantic interoperability is an important step
to promote sharing/exchange of information in the medical
domain, the contribution of our work is the association of
these technologies within the IHE-XDS profile.
Ideally, privacy is assured if a consumer uses a resource
or service without disclosing his consumer identity; the
resource or service can be used multiple times without
others being able to link these uses together (unlinkability)
or observe that this resource is being used (unobservability)
[2]. In medical domain, it can be illustrated by a doctor
accessing a set of data of one patient stored in several
repositories. The system need to assure that nobody else can
know that all these data belongs to the same patient
(unlinkability). Or, when a patient access his own data, the
system should assure that nobody will observe it
(unobservabiity), because if the user (patient) is associated
to the data, the unlinkability criteria is lost. The encryption
and the pseudonymization techniques can not solve this
problem. An organizational strategy is necessary to improve
the privacy of patients, and this is another contribution of
the paper.
The eHealth architecture detailed in the next section
shows how privacy, hiding users’ identity and assuring
authenticity/integrity of documents and messages can be
established. The approach is based on a multi-level
architecture where: users are authenticated by a trust
authority and associated to a set of rights access; data are
pseudonymized; non-anonymized documents are encrypted;
strict sequences of activities are provided; and messages are
stored encrypted for audits purposes.
109Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine
III. ARCHITECTURAL OVERVIEW
The main components of the proposed eHealth platform
are presented in Figure 1. Some components (e.g., LDAP,
CA, STS, etc.) are omitted to improve the visibility and the
architecture explanation. The technology used to implement
these components are out of the scope of this paper. The
architecture was defined to support centralized and
decentralized information repositories, based on the IHE
XDS infrastructure profile with a central registry, one or
more centralized repositories and one or multiple
decentralized repositories.
The heart of this platform is the Central Medical
Registry (CMReg). Each document provided by the primary
systems is registered in the CMReg with its physical
location in one of the repositories. For illustration, Figure 1
shows two centralized repositories: (1) the Centralized
Medical Data Repository (CMDRepo) stores unencrypted
information without any person identifying data; and (2) the
Internal Document Management System (Int. DMS) that
stores encrypted medical information, which may contain,
as well, person identifying data. External storage of data is
also supported by the platform. For example, Primary
Systems may decide to use their own repositories (Ext.
DMS), placed in a DMZ (Demilitarized Zone) from their
network. Those external repositories always contain
encrypted information.
This organization allows normalizing data storage and
data retrieving within all data repositories. CMReg keeps
meta-data of all information registered in the platform, what
makes the CMReg a potential target for malicious attacks.
Protecting the CMReg is one priority of our security
strategy. A set of components is combined to improve the
security of the system. In order to describe the data
exchange protocol, it is assumed that an existing Public Key
Infrastructure (PKI) is in place and each registered entity
has a public/private identity key pair. The notations
introduced in Table 1 are used.
Table 1: Notations
Notation Meaning
PI Patient Identifying Data (name, address, sex, …)
MD Medical Data (lab results, diagnosis, …)
EU End User. Can be patients, health providers,
researchers, etc.
SK Symmetric key
Tk Token
ps Pseudonym
(m)SK Message encrypted with a symmetric key
(m)UPK Message encrypted with the public key of a user U
A. User identification
Two groups of users are considered for the eHealth
platform, according to the role that they play: (1) Primary
Systems, who uses the platform to send medical data
produced by healthcare providers (ex., laboratory results, x-
rays, or discharge letters) via the “Push” web-service; (2)
End Users, healthcare professionals or patients that use the
platform to acquire stored medical information.
The procedure to use the platform is the same for both
groups. Users need an electronic card (eID for short) for
authentication and for data integrity (through e-signature of
documents).
The access to the system requests the following steps:
Figure 1: Architecture of the Platform
110Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine
1. Users holding their eID to request an “entry ticket”
to the Secure Token Service (STS). The user can request
an entry token via Web (i.e., as data consumer through a
Web-client – right side of Figure 1) or via an Intranet
(i.e., as data producer through HealthNet – left side of
Figure 1). The request message is signed on user's side
and encrypted with the STS public key.
User → STS: (eID)STSPK
2. STS verifies the signature with the certification
authority (CA). If refused, the user’s access is denied.
STS → CA: (eID)CAPK
CA → STS: (Check result)STSPK
3. STS requests access rights information to
Lightweight Directory Access Protocol (LDAP)
manager. The answer is a set of roles that this user can
play.
STS → LDAP: (eID)LDAPPK
LDAP → STS: (roles)STSPK
4. STS prepares the entry ticket, encrypts it with the
user’s public key and sends it to the user.
STS → User: (entry ticket)UserPK
For the client, the entry ticket will give the access to a set
of Web-applications in the Web-Server and for the Primary
Systems, it will allow them to use the “Push” web-services
provided by CMReg system.
This protocol requires that users are pre-registered at
STS, that they have an eID recognized by a certification
authority (CA) and that he uses this eID during the whole
process (entry and service request). Data (e.g., the entry
ticket) will be rendered encrypted and the user needs his
private key to decrypt. This strategy protects users from eID
stealers.
B. Pseudonymization
As medical data are registered in the CMReg, they are
associated to pseudonyms and stored in one of the data
repositories. The mapping between pseudonyms and the
corresponding person identifying data is stored in a Trusted
Third Party (TTP). We use the term TTP for the mapping
software and TTP driver for the organization that operates
this software. The mapping between the person identifying
data and the pseudonyms must never be disclosed. To assure
this, a «token» is used and all communication is encrypted.
The psedonymization service can be summarized in the
following 6 steps:
1. The Primary Systems (PrS) provides a clean
separation of person identifying data and its related
medical data (i.e., two separated documents are created).
The medical data may be unencrypted but without any
person-identifying information, or encrypted.
2. The person identifying data is sent to the TTP
together with a token. PrS → TTP: (Tk,PI)TTPPK
3. The medical data (or a reference to the medical
data) is sent to the CMReg (Push service) with the same
token. The document itself is stored in one of the
repositories. PrS → CMReg: (Tk, MD)CMReg PK
4. The TTP generates a pseudonym, stores it besides
the person identifying data and waits for the CMReg
asking for the pseudonym.
5. The CMReg sends a request to TTP with the
“token” and gets back the generated pseudonym:
CMReg → TTP: (Tk)TTP PK
TTP → CMReg: (Tk,ps)CMReg PK
6. CMReg establish a mapping between the
pseudonym and the (encrypted) document with the
medical data. The pseudonym becomes part of the meta-
data of the document and is not visible outside of the
platform;
Additional security packs can be used to improve the
privacy of patients. For example:
•Scheduled pseudonym exchange: The pseudonyms
will be exchanged on a regular basis each hour or if
necessary in shorter intervals. The stolen mapping table
of a hypothetical evil TTP administrator only works if
the hypothetical evil PMIP administrator has stolen the
medical databases during the same time interval. If this
extension gets necessary further elaboration concerning
the switching time has to be done.
•Multiple pseudonymization: To further enlarge the
trust level, multiple pseudonymization steps are
possible. The first pseudonymization service maps real
identities to pseudonyms. The second pseudonymization
service maps the first pseudonym to a second
pseudonym. The n-th pseudonymization service maps
the (n-1)-th pseudonym to an n-th pseudonym. Each
pseudonymization mapping is hosted by an independent
trusted N-th party.
•A combination of scheduled pseudonym exchange
and multiple pseudonymization with different
pseudonym exchange intervals of the different levels is
possible.
111Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine
C. Encryption/Re-Encryption
When the separation of person identifying data and the
related medical data is not possible (e.g., X-ray image), the
privacy is guaranteed by a combined encryption strategy. It
consists of 5 steps:
1. The medical document (MD) is symmetrically
encrypted with a symmetric key generated by the PrS –
one for each document, respectively;
{(MD)SK}
2. The symmetric key is encrypted with the public
key of TTP;
{(SK)TTPPK}
3. The encrypted document and the encrypted key is
stored together in one of the repositories.
4. When requested by an authorized user, the
encrypted key of the document is separated from the
document, sent to TTP, which will be in charge of re-
encrypting the key with the public key of the legal
requester, and regrouped with the document:
CMReg → TTP: ((SK)TTPPK,EU)TTPPK
TTP → CMReg: ((SK)EUPK)
5. Both, the encrypted document and the re-encrypted
key, are sent to the end-user.
CMReg→EU: {(SK)EUPK, (MD)SK}
This distributed encryption/re-encryption strategy
prevents both insiders’ server attacks and eavesdroppers.
The repositories store the encrypted documents with the
encrypted keys. The re-encryption of the encrypted
symmetric keys is done at the TTP side. The TTP never has
access to the encrypted document while the repository never
has access to a disclosed symmetric key. For eavesdroppers
of the repository or eavesdroppers of the TTP the same
argument holds like for the corresponding administrators.
Only with simultaneous access to TTP and repository the
information can be disclosed. In this process, the
pseudonym of the patient can differs from one primary
source to another, what improve the unlinkability of the
solution.
D. Hiding information from the servers’ administrators
Two types of files with medical data are stored in the
platform one unencrypted/pseudonymized and the other
encrypted/pseudonymized. At least 4 servers compose the
platform infrastructure (TTP, CMReg, Repositories, Web-
server). TPP and Repositories are protected by the trick
described above. The Web-server is often the main target of
attacks because it is used to transmit data to/from the end
user. A malicious administrator may install an illegal
logging, catching the requests containing patient names and
catching the results containing medical data for those
patients. With a simple strategy, after cumulating this log
information, the administrator may associate the set of
health data with patients’ identity. To prevent this, patient
identifying data are encrypted with the public key of the
TTP. Then the web-server only transmits the information to
the TTP. And the TTP has one additional step to do: it has
to decrypt the patient identifying data. Then it continues by
looking-up and providing the pseudonyms and waiting for
the CMReg request for the pseudonym-list. An analogous
tunneling method is applied for result transmission over the
web-server to the receiver.
E. Consent and User Management
A secure token service with a healthcare related LDAP
guards the access to the whole system. Users need to be pre-
registered and associate to a set of access rights to use the
applications of the system. An elaborated consent
management system protects medical information from any
unwished access on the basis of the patient's will. For
example:•for all documents, for an episode, for a
medical case;
•for all doctors, for all doctors of a special
discipline, for named doctors;
•for exchange over borders;
•for access in emergency case;
•…
A specific consent description language [12] has been
proposed to declare consents. CMReg checks the
conformance of an access first with the patients' consent
declaration for each requested document. Patients can
access the system via web-applications and their identity
will be substituted by a pseudonym define by TTP
(following the same process described in 3.2).
F. Trustful statistics
Pseudonymized results in the platform offers the
possibility of using data for statistics analysis without the
risk of data protection violations. Therefore a preparation
process is necessary to exchange the internal used
pseudonyms by other pseudonyms created for the statistics
purposes. Internal used pseudonyms are supposed to be
hidden from external users. Statistics analysis can use a
predefined set of not encrypted medical data that must not
contain patient identity information. If further statistical
research has to be done, where personal data like age and
sex are necessary, exceptions can be created. But, it may
require special authorizations from public authorities in
order to guarantee citizens’ privacy.
112Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine
IV. CONCLUSION AND FUTURE WORK
This paper has presented an architecture for eHealth
platforms that combine different methods for data protection
in order to improve the security level and assure the privacy
of patient’s data.
The architecture’s concept was developed based on
standards protocols and proposes some extensions for
multi-level privacy protection. The extensions consist
mainly on the communication with the Trusted Third Party
server and are shown to be necessary when considering
potential intern attacks (malicious administrators). A
“ticket” based protocol is proposed to assure authentication
of users. It is associated with an electronic card (provided
by a certification authority) that offers signature and
identification services.
The architecture was designed to promote exchange and
sharing of medical data and to collect/store data for statistics
finalities. Thus, the collected data could not be encrypted,
but the identity of the patients is never exposed. The
proposed approach uses pseudonymization methods for
hiding patient’s identifying data. But, during the data
exchange process, even pseudonymized data are encrypted
using PKI solutions to avoid eavesdroppers attacks. As the
platform was not conceived to provide P2P communication,
a strategy to safely store unanonymized data was necessary.
An association of symmetric and asymmetric encryption is
proposed, which involves at least two different servers to
provide the necessary information to the end user. This
approach has shown to be efficient against insiders’ servers
attacks and against client intruders that try to steal the client
identity.
Future works are planned to improve the identity
protection when the patient should be able to access his own
data. This particular increase the risk of eavesdroppers
attacks over the web-server because the identity of the
patient is known (equal to the requester identity). We are
also working on the implementation of the platform and on
the validation with case studies specified with user groups.
V. ACKNOWLEDGEMENTS
The authors thank their partners from the Health Ministry
of Luxembourg for their very helpful advises and for
providing insights into organizational and legal aspects of
the eHealth platform.
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113Copyright (c) IARIA, 2011. ISBN: 978-1-61208-003-1
eTELEMED 2011 : The Third International Conference on eHealth, Telemedicine, and Social Medicine