Electronic Health Records: a key enabler for eHealth

Andreas
Ligtvoet, RAND Europe

Issue: Electronic health records open
up new options for healthcare delivery: better access to relevant information,
consultation and cooperation between healthcare providers, and monitoring and
care delivery at the patient’s home. However, issues of confidentiality and
privacy need to be balanced with the requirements for increased communication
between medical practitioners.

Relevance: If the health
applications enabled by electronic health records are to be taken up, they will
need widespread consensus among all stakeholders (public authorities, medical
professionals and patients). This will require focused and coordinated action at
both national and EU-level.

Introduction

Over the last few years, the
Lisbon objectives and the eEurope policy actions have painted a strategic vision
of the direction that Europe is heading regarding competition and services in
the information society. The use of eHealth has a role in the constant challenge
of balancing the requirements of reducing the cost of healthcare (due to
budgetary constraints), while at the same time aiming to increase access and
quality.

eHealth offers the potential to enhance the
capacity to monitor and protect public health through better health
surveillance

eHealth offers the potential to enhance the capacity to monitor
and protect public health through better health surveillance. Having a
comprehensive system for monitoring chronic non-communicable diseases - based on
small monitoring devices - will provide medical researchers and public health
officials with comprehensive health data on the population, thus enabling them
to identify opportunities for improving the health system. Furthermore, citizens
can be better informed by high quality health-related information services. They
will provide online access to health information, support communities,
pharmacies, decision aids, and tools to handle administrative tasks. Patients
can test specific conditions, such as blood glucose levels, respiratory rates,
etc. or produce an ECG using e-devices at their own home (referred to as patient
self-management or telemedicine). Many senior citizens will become
housebound but will still need services, training, and reinforcement of medical
self-management, as well as continued connection to clinicians and contact with
other patients. And finally, integrated patient management aims to
provide mechanisms for client case management and efficient sharing of
information between care professionals, such as the exchange of data (medical,
administrative or financial) which today remain a cause of problems in
healthcare.

These developments can have a number of advantages: specialized
clinical expertise may be made available in rural settings and it may become
possible to obtain a second opinion in medical specialty areas; medical
facilities within the EU are to be interlinked and accessible to all,
particularly when patients seek treatment in other EU member states (improving
access). These changes transform the traditional organizational model into a
network organizational approach where the user is the focal point of health and
social care: instead of the doctor acting as sole manager of patient care,
patients are becoming partners in managing their own care; new technologies will
enable safer independent living and increased social inclusion (improving
quality of life).

eHealth-related developments are transforming the
traditional organizational model into a network organizational approach where
the user is the focal point of health and social care

The basis for these
developments is an electronic health record (EHR; the central role of EHR in the
services described is depicted in Figure
1). All developments in eHealth rely on the transfer and storage of
medical data. On the one hand this enables the foreseen applications, but on the
other hand it opens up a whole range of discussions on organizational change,
technical implementation and security & privacy. Before the records can be
used ubiquitously, however, there should be more clarity on these
issues.

eHealth requires the storage and transfer of
medical data; thus the development of the electronic health record is a key
enabler of progress in the field

Figure 1. Different e-health services enabled by
electronic health records

Electronic health records

In their simplest form, electronic health records are hospital
records for a single inpatient stay or social insurance account records.
However, in the future they could also contain the record of the individual’s
genome, or the entire history of an individual’s interactions with the
healthcare system. The electronic health record is widely cited as a critical
key to modernizing healthcare in the EU. It may save resources and effort by
eliminating duplicate testing and the need for doctors to take down notes on a
patient’s history repeatedly. The added advantage - since the advent of mobile
communications - is that the data can be stored in one place (helping ensure
data integrity) but accessed via wireless networks (GPRS, 3G, WIFI) at another
and thus cater to the needs of mobile carers (nurses and doctors making house
calls) or telemedicine applications. Ideally these EHRs will be easy to use by
different specialists, easily accessible (for example, via mobile devices and
terminals) and ensure secure transmission of personal data.

In the future electronic health records could
progress from being a simple record of a hospital stay to containing the
individual’s genome or an entire history of interactions with the healthcare
system

The data collected can make a major contribution to health
monitoring, medical research, and the measurement of system effectiveness by
providing aggregate health information. Health information systems have the
capacity to exchange information electronically with private providers of
medical services such as clinics and laboratories. Standardized definitions and
access to databases will permit more useful analysis of information on incidence
and prevalence of chronic diseases and injuries, risk factors and conditions,
services, programmes, and outcomes. When linked with clinical decision-support
systems, the electronic health record can facilitate evidence-based diagnosis
and treatment. Through the use of the Internet, smart cards, and other
information technology, patients will be able to access their own electronic
health record and take on the role of ‘partner’ in managing their own health
(although this may lead to opposition from health professionals who disapprove
of laypeople interfering with their job or self-medicating).

Technology could empower patients, enabling them
to take greater control over their electronic health record and take on the role
of ‘partner’ in managing their own health

The storage of large amounts of personal data in one central
EHR database has advantages, as we have seen. However, it also raises concerns
about the accessibility of these data: medical information is information of the
most private nature. More than with other data, care should be taken to restrict
access and anonymize where possible. Here we see that the interests of the
different stakeholders in the process may come into conflict.

Stakeholder requirements

It is today very clear that technology is only part of the
story: successful implementation of EHR also depends on the acceptance of the
stakeholders involved and their willingness to alter their traditional way of
working.

Arguably, as end-user of many of the services, the most
important stakeholder is the patient. Present and future patients expect
specific information to be available about their condition so as to allow them
to have an informed discussion with their care provider. Furthermore, they
expect all assessment, treatment and care to happen at a time and place of their
choosing and to be protected from unsafe and poor quality products and services
ordered via the Internet. But most importantly, they expect privacy and
confidentiality; i.e. that patients themselves should be in charge of their own
medical records.

Electronic health records (EHRs) could be
implemented so as to be provided on-line over a secured network or embedded on a
smartcard

EHRs could be implemented so as to be provided on-line over a
(secured) network or embedded on a smartcard. Smartcards can provide persistent
and portable information storage as well as identification, digital signature,
security and payment functions. It is also clear that that Privacy Enhancing
Technologies, such as data scrambling and biometric or other forms of
identification are required when handling personal data, on both the citizen’s
as well as the professional’s side. For example, pharmacists would only need to
access a limited subset of the individual’s complete record.

However, health- and social-care providers, hospitals or any
wider consortia of service providers in public and private sectors expect
services to support (and not hinder) them in their routine tasks. Medical
records and other health applications will have to be accessible from mobile
devices in order for healthcare professionals to be able to work effectively. As
health records need to be accessed from different locations using different
devices, the information provided should be scalable so that it will also be
usable over connections with less bandwidth or without full audio/video
capabilities.

As health records need to be accessed from
different locations using different devices, the information provided should be
scalable so that it can also be used over connections with less bandwidth or
without full audio/video capabilities

As with many other ICT applications, the
service stands or falls with the standardization that is applied to both the
data-format and the software and equipment handling the data. If the exchange of
health records both nationally and internationally is to take place in an
effective and efficient manner, interoperable standards will have to be laid
down at a transnational level. To avoid vendor lock-in and to facilitate uptake,
the standards used should be open and accessible to scrutiny.

Analysis

Like in many fields of IT, the technical theoretical vision has
given rise to considerable expectations, but the realization of these
expectations is taking longer than anticipated. It is therefore crucial to
analyse the strengths, weaknesses, opportunities and threats (so-called
SWOT-analysis) of the present situation to be able to come up with policy
recommendations that build on what is available while trying to target the
stakeholders’ requirements. For EHR, an analysis of the kind alluded to
highlights the following points for attention.

Strengths

Weaknesses

There are many international and EU projects
that aim to implement electronic health records.

There is consent
among European Health ministries that this is a high priority issue.

Healthcare professionals understand the benefits – that an
interchangeable patient health record could facilitate cooperation among
professionals, while preventing repetitive tasks and costs.

There are relatively few examples of
so-called ‘transmural care’1.

Cooperation between different care institutions remains difficult.

The implementation of the required systems is often seen as an
activity falling outside an institution’s normal budget.

The
willingness and ability of healthcare staff to accept and manage change is
seen as a major obstacle to implementing EHR.

Opportunities

Threats

As ‘managers’ of their personal information,
citizens will be empowered to manage their own healthcare.

Not
duplicating data when a patient moves from one care institution to another
reduces the risk of data errors and enables institutions to focus on their
primary task of caring.

Information brokers and middleware
solutions will become an important area of development.

The
diversity of solutions already available presents a rich learning
opportunity.

There is an opportunity for close cooperation on
standards setting.

Continuing proliferation of eHealth
applications is likely to provoke moves towards providing shared access
infrastructures.

A shift in professionals’ attitude is
required: it should become a client-oriented process. This requires people
to cooperate beyond the boundaries of their institutions, to describe the
medical history of patients so that it suits all users of the information.

Clearly, this requires large coordination efforts.

If the
question of data protection and certification is not addressed, the
take-up of services might encounter resistance.

Synthesis

When combining the strengths, weaknesses, opportunities and
threats above, we can arrive at the following synthesis, reasoning from the
patient outward to the healthcare system:

Patients will need to feel comfortable about having their data stored on
electronic media. Although it is often said that a patient will accept
anything in order to improve his/her quality of life, a far stronger position
would be to provide adequate protection of data by using privacy enhancing
technologies. User interfaces will need to be simple so that the patients feel
in control of their data. Also, care should be given to explain the process of
data capture and retention.

Secondly, obstacles may need to be overcome in order to encourage adoption
of new technologies by practitioners. Getting the primary care physician, who
is often the patients’ first contact with the healthcare system, to ‘buy in’
is critical. But achieving this will take more than just money and clever
software. If widespread use of EHR is to become a reality, physicians will
need to be motivated to adopt new work practices and tools. They will need to
see a strong business case outlining the tangible benefits as well as
assurances about the reliability of the technology, the appropriateness of the
user-interface, available training, and technical platforms. Standardization
of the exchange of electronic health records and adoption of national
standards for entering data is needed in order to avoid misinterpretation of
information.

Thirdly, there are the technical challenges related to developing the
hardware, software, and technical support to operate and maintain the EHR
network. Interoperability of EHRs is critical and will hinge on the
development of consistent standards for data collection, storage, and
retrieval across organizations and jurisdictions. For the development of a
user interface, key content elements such as the patient’s problem list, and
the management strategies (including diagnostic testing, medications, and
progress notes), will need to be captured. A structured problem list could be
the means of helping the provider to navigate easily and intuitively through
the relevant summary of patient information. Data entry must be designed to
help the users keep the data accurate and meaningful.

Fourthly, and finally, there are the challenges faced
by the healthcare system and policy-makers. Confidentiality and protection of
patient data is something that needs to be emphasized in any European
regulations that are adopted relating to e-health system security. In this
field, in particular, a well-coordinated approach between the authorities at
European, national and regional level is needed in order to foster the
exchange of experience and information.

Apart from overcoming the technical challenges,
both patients and medical practitioners need to be convinced of the benefits of
EHRs if they are to be motivated to adopt them

Conclusions

It has become clear that implementation of ICTs in healthcare
can and will only succeed if the services are adapted to the specificities of
the existing healthcare system. Nevertheless, the system itself will need to
evolve in order to facilitate better health services. The crux of EHR as an
enabler of services lies not only in the "e" of electronic, but also in the
organizations, budgets, stakeholders, communication and cooperation that provide
the context of the services.

The implementation of an electronic health record
crosses the boundaries between healthcare and ICTs, as well as invoking
organizational, political and economic issues

The implementation of an electronic health record crosses the
boundaries between healthcare and ICTs, as well as invoking organizational,
political and economic issues. If the development of EHR is to progress on any
level (local, regional or EU-wide), there should be close cooperation between
the responsible administrative authorities; including those at European level if
feasible.

However, a number of other issues need to be tackled, in
particular, legal and regulatory issues concerning the ownership of data, safety
and confidentiality of data and minimal requirements to ensure this. In
addition, liability in the case of data-loss, corruption or accidental
disclosure will need to be addressed. Citizens need to trust that their data is
in safe hands; professionals need to be free to use optimal technology that
suits their needs. Although it remains a challenge, finding the correct balance
between these needs seems solvable.

The knowledge in the shape of experience and existing pilots in Europe
will need to be collected and monitored.

On-the-ground experience can be benchmarked and tested in different
healthcare contexts: one solution might be more appropriate in one country
than another.

More effort is needed to resolve the mentioned legal issues and to
harmonize the regulatory and legal frameworks in the different member
states.

In some countries efforts to raise awareness will be needed, either
because of lack of information or because of bad examples in the past.

This will facilitate the role of eHealth initiatives in
balancing the quality, cost and accessibility of healthcare systems in
Europe.

Keywords

electronic
health record, EHR,
patient
dossier, ICT,
e-health,
privacy

Note

1. Transmural care is the care that goes beyond the walls of one single
institution. It is care tailored to the needs of a patient and provided on the
basis of collaboration agreements between generalist and specialist care
providers of different organizations such as hospitals, revalidation homes, and
home care organizations.

References

Braun, A. et al. Prospecting e-health in the context of a European
ageing society: quantifying and qualifying needs. ESTO/IPTS,
(forthcoming).

Huynen, M. and P. Martens. Future health: the health dimension in
global scenarios. ICIS, Maastricht, October 2002.

Ligtvoet, A. Prisma Strategic Guideline 2 – Health. Leiden, April
2003.

PRISMA. Report on changes and trends in service delivery. January
2001. (available on http://www.prisma-eu.net).

PRISMA. Pan-European changes and trends in e-health services
delivery. August 2002. (available on http://www.prisma-eu.net).

Silber, D. The case for e-health, presentation at the European
Commission’s first high-level conference on e-health. Brussels, May 2003.

Contacts

Andreas Ligtvoet, RAND Europe

Tel.: +31 71 524 51 83, fax: +31 71 524 51 91, e-mail: [email-masked]

Marcelino Cabrera, IPTS

Tel.: +34 95 448 83 62, fax: +34 95 448 83 39, e-mail: [email-masked]

About the author

Andreas Ligtvoet works as policy analyst at RAND
Europe, focusing on (technology) foresight and future studies. One of his
interests is in the effect of new technologies, such as eHealth, on societal
change. He received his Master’s degree in Science & Policy from the
University of Utrecht, where his research focused on technology transfer.

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