Health Privacy and Political Attitudes

Health Privacy and Political Attitudes

Concerning the Electronic Patient Record in the Netherlands
Master Thesis

2010-04-01

Author Evert Mouw
Student number S 0332291
Institute Leiden University
Department Political Science
First supervisor Prof. Dr. Joyce Outshoorn
Second supervisor Dr. Frits G.J. Meijerink
Wordcount Ca. 22435 incl. attachments

Abstract

The storage of personal health information in nationwide electronic patient record (EPR) has
led to a heated political debate in the Netherlands. The link between the political attitudes of
individuals and the value given to health privacy is largely unknown. This study introduces the
Health Privacy and Political Attitudes Survey. Results: most political attitudes are not a good
predictor of ideas on health privacy, but authoritarian attitudes strengthen the trust in
(government regulated) electronic records. Weak evidence suggests that women are more
enthusiastic about the EPR. Earlier research from the Rathenau Institute (2009) indicated that
higher educated persons are less enthusiastic about the EPR; this study weakens their finding.

Abbreviations
BSAS
EHR
EPR
HPPAS
MC
MD
MP
NHS
NKO
WVS

British Social Attitudes Survey
Electronic Health Record
Electronic Patient Record
Health Privacy and Political Attitudes Survey
Medisch Contact (a Dutch medical magazine)
Medical Doctor
Medical Practitioner
National Health Service (UK)
Nationaal KiezersOnderzoek (Dutch Parliamentary Election Studies)
World Values Survey

Front cover illustration
I composed the front picture using these original pictures:
database icon by Mauricio Piacentini, public domain
http://commons.wikimedia.org/wiki/File:SQLite_Database_Browser_icon.png
folder (blue) by the Open Clip Art Library, public domain
http://commons.wikimedia.org/wiki/File:Folder-blue.svg
medical imaging by Nevit Dilmen, GNU Free Documentation License
http://commons.wikimedia.org/wiki/File:50pman_medical_imaging.svg
no person by an unknown author, GNU Free Documentation License
http://commons.wikimedia.org/wiki/File:No_person.jpg
physician icon by Aha-Soft, free or non-commercial use
http://www.aha-soft.com

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Acknowledgements
Prof. Dr. Joyce Outshoorn for guiding me while writing this thesis.
Dr. Frits G.J. Meijerink for reviewing the draft and final versions of the thesis.
Drs. Armèn Hakhverdian for helping with the draft research proposal.
Mireille Schaap, my girlfriend and medical student, for proofreading my thesis.
Martin Tückermann, MA, historian, for many interesting discussions.
The Leiden Institute for Advanced Computer Science for some good courses.
All errors are my own.
Writing Conventions
This thesis is written using the British spelling. I use random capitalisations in headings if I
feel it to improve readability. References are given using the Harvard system, APSR style
(American Political Science Review). For dates, the ISO-8601 international standard is often
used (for example, 2009-02-04 means February 4, 2009). For more information about this
standard, please refer to:
http://www.iso.org/iso/support/faqs/faqs_widely_used_standards/widely_used_standards_other/date_and_
time_format.htm

About the Author
Evert Mouw is a graduate student of political science in Leiden and of medical informatics
in Amsterdam. He also is a Microsoft certified systems engineer (MCSE).
Email
Personal website
Thesis website
post@evert.net
http://www.evertmouw.nl
http://www.epd-enquete.nl

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List of Tables

Table 1: Public popularity of health databases by country ................................................................. 24
Table 2: Count of „privacy‟ in the 2006 platforms .............................................................................. 29
Table 3: gender and age................................................................................................................ 39
Table 4: religion ............................................................................................................................ 40
Table 5: political parties, absolute numbers ..................................................................................... 41
Table 6: political attitude correlation ................................................................................................ 42
Table 7: age ................................................................................................................................. 43
Table 8: gender............................................................................................................................. 43
Table 9: gender and party .............................................................................................................. 45
Table 10: education....................................................................................................................... 46
Table 11: multiple regression (linear) for DV principle ....................................................................... 47
Table 12: Encoding of the party variables in the SPSS database ....................................................... 67
Table 13: Dutch political parties in parliament after the elections of 2006-11-22 .................................. 69

List of Figures

Figure 1: Political map in “The Floodgates of Anarchy” (Christie and Meltzer, 1970)............................ 14
Figure 2: Google Trends: electronic health record ............................................................................ 22
Figure 3: Google Trends: electronic medical record.......................................................................... 22
Figure 4: Google Trends: ele[c|k]tronisch patientendossier ............................................................... 23
Figure 5: Sigmund, a Dutch comic by Peter de Wit........................................................................... 28
Figure 6: Privacy Barometer, party ranking of 2010-02-12................................................................. 30
Figure 7: Age pyramid of the respondents, output from SPSS ........................................................... 38
Figure 8: Age pyramid for the population at large (CBS, 2010) .......................................................... 38
Figure 9: Religious groups (CBS, 2009) .......................................................................................... 40
Figure 10: gender difference .......................................................................................................... 44
Figure 11: gender and political positioning....................................................................................... 45

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Contents

1. Foreword 7
2. Introduction 11

2.1. New technology, new politics 11
2.2. Reading Guide 12
3. Previous work 12
4. Literature review 13

4.1. Political space (attitude mapping) 14
4.2. Privacy 16
4.3. Health Privacy 18
4.4. Opting in, opting out 20
4.5. EPRs and State Building 20
4.6. Trusting the Government 21
5. The current state of health databases 21

5.1. It started around 2006 22
5.2. Popularity and use 23
5.3. Storage and accidents 25
5.4. Corporate initiatives 26
5.5. Introduction in the Netherlands 27
6. Privacy and politics in the Netherlands 28

6.1. Dutch election programs 28
6.1.1. Privacy Count 29
6.1.2. Analysis 29

6.2. Privacy Barometer 30
7. Research question 30
7.1.1. Summary 31
8. Theory and expectations 32

8.1. Conceptualisations 32
8.2. Expected attitudes based on political dimensions 32

8.2.1. Left vs right 33
8.2.2. Libertarian vs authoritarian 33
8.2.3. Materialism vs postmaterialism 33

8.3. The role of education, age, gender, and religion 33
8.4. The relation between health privacy and other privacy issues 34
9. Research methods and materials: The Health Privacy and Political Attitudes Survey 34

9.1. A quantitative approach 34
9.2. Design of the survey 34
9.3. The required number of participants 35
9.4. Viral marketing 36
10. Results 37

10.1. Demographic Analysis 37
10.1.1. Sample size and gender 37
10.1.2. Survey running time 37
10.1.3. Age distribution 37
10.1.4. Age and gender 39
10.1.5. Education 39
10.1.6. Religion 40
10.1.7. Evaluation of the viral marketing and randomness 40
10.1.8. Summary of the Demographic Analysis 41

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10.2. Statistical Analysis 41
10.2.1. Political party dimensions 41
10.2.2. Political attitude axes of the BSAS 42
10.2.3. Age and principle 43
10.2.4. Gender and principle 43
10.2.5. Gender and party 44
10.2.6. Religion and principle 46
10.2.7. ID card and principle 46
10.2.8. Education and principle 46
10.2.9. Summary of the Correlations Found 47
10.2.10. Multivariate linear regression model 47
11. Discussion of the Statistical Analysis 47
12. Comments Report 50
12.1.1. About the survey format 50
12.1.2. Against the restricted use of health information 51
12.1.3. Reasons for being against the EPR 51
12.1.4. Ideas on the implementation of the EPR 52

12.2. Analysis of the comments 52
13. Conclusions 54
14. References 55

14.1. Books and Articles 55
14.2. Materials 57
14.3. News Media 58
15. Attachments 60

15.1. Att: Questionnaire 60
15.2. Att: datafile addendum 66
15.3. Att: party encoding in the data file 67
15.4. Att: SQL queries 68
15.5. Att: Dutch elections of 2006 69
15.6. Att: EPR mentioning per Platform 70
15.7. Att: all comments 71

15.7.1. Comments received from the survey free text input 71
15.7.2. Comments received by email 74

15.8. Att: The Medisch Contact survey 76

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1. Foreword

… in the past no government had the power to keep its citizens under constant surveillance. …
With the development of television, and the technical advance which made it possible to
receive and transmit simultaneously on the same instrument, private life came to an end.
— “Nineteen Eighty-Four” (Orwell, 1949)

Today, I made a walk through the woods and heathland of the Veluwe, a region in the
Netherlands where my father‘s family has lived for centuries. The region is known for its
beautiful nature and old-fashioned people. Only two generations ago, these people were
independent, lived on their own, and knew nothing about extensive regulations, digital
networks en electronic databases. In many respects, I belong to this region – living and
thinking in ways that many would regard as out-dated.

After the walk, I switched on my computer. I have multiple computers at multiple locations,
earned my Microsoft systems engineer certification years ago, and I also explored the world of
arcane command line use with Linux. Being in information technology is not just about
technical skills. The geek world has its own literature, culture, and politics: from the
Hitchhiker‘s Guide to the Galaxy to the formation of new identities. The network has replaced
the city. Digital property is not bound to space or time. The flow of information can cross
boundaries that are taken for granted by the old world. This new culture and technology is
guiding the main culture to new roads. Access and availability of information is becoming
limitless. The individual thus will have access to a limitless choice of ideas, lifestyles and art.
That changes the relation between society and the individual. Society will be less able to guide
the individual to some ‗best option‘, because the individual wants choice and wants to choose
himself. Those who are first to discover the new information networks are more likely to reject
the authoritative tendencies of modern society and modern government. The people of the
current postmodern technoculture are often not understood by mainstream society, for they are
too far ahead of the others. I am a part of that culture, too.

So where does that leave me? On one foot I am standing in a world too old to be compatible
with modern culture, and on the other foot I am standing in the world of the artificial, too far
ahead of the mass to be compatible with modern culture. But what is, then, modern culture? I
like to define it as the nation-state with a fat government. It did not exist a few hundred years
back, but now it does and it taxes and regulates the not-so-free citizens as if they were part of a
machine. Its properties are bound to space and time. And, as such, it has difficulty coping with

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the new digital networks that are definitely not bound to space and time. The masses and the
governments want to tighten their grip on the new developments. Instead of doing nothing and
becoming irrelevant, some of them now try to guide and control the new developments. They
limit free speech on the internet and they create massive databases and espionage networks to
spy on their own citizens in order to protect and care for their citizens. It is a bit like the
Orwellian Big Brother, but in some respects, it is becoming even worse.

I will use medical records, the subject of this thesis, as an example. The electronic patient
record (EPR) will improve health care and will make patients less dependent on one hospital or
one doctor. It was developed by universities and private organisations, but in the Netherlands,
it is now regulated by the government. The digital records make patients independent of space:
everywhere in the Kingdom of the Netherlands, their records will be available and medical care
can be arranged. No time is needed to transfer the records, and they will be available 24 hours
a day, 7 days a week (independent of time).

The sciences of the artificial will penetrate and change our world like never before. New
possibilities are emerging, and new risks. Many computer scientists and programmers love the
new possibilities, but at the same time urge the public to take measures to secure their privacy
and data. The problems begin to emerge when you think about the meaning of ownership of
data. Who owns the data? The creator of the data, the owner of the physical storage where it is
to be stored, the system administrator who controls the computer storage, the person that is
described by the data, or some higher regulating body? It is hard to define, but for sure, when
you can control both the storage of, and the access to your data, then nobody can dispute your
ownership. For example: you have an encrypted memory stick with some nude photographs of
your girlfriend. As long as you do not give the password to others, those photographs are
yours. But email them to some friends, and you lose all control. Or store them online – and you
might think that you are the only one that has access, but who knows who can have access to
your online photographs, your online emails, your online tweets, and the list goes on and on.
Who knows who has access to your online medical records – you have to trust the
administrators of the database. You have no control over the storage media, nor do you have
control over the access mechanisms. Things would be different if all your medical records
would be encrypted and only you would have the private key, but such is not the case.

I am using my own email server. I like to store my email on my own server. Maybe I am like
that guy in Vernor Vinge‘s book Rainbows End that used an old computer, so that he could
have control over his own hardware and software. In the end, even his computer was taken

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over. Digital information is of such nature; it is very hard to protect. Digital information is very
easy to replicate, according to Icke (2009), astrophysicist in Leiden. He dislikes the EPR with a
passion, because he fears that the information will not be safe, and very hard to delete. He
would prefer to carry his medical records on his own memory stick.

Mind though, that I understand why the ―networked databases‖ approach was chosen. Each
hospital will administer their own databases, and a real central database for the medical records
will not exist. Instead, a national directory will be implemented, so that every doctor can search
for medical records and access them, wherever they are. This decentralised, distributed
database system is more robust and more secure. It has its advantages over the idea to carry
your records on a memory stick. Such memory sticks are easily forgotten, stolen or lost, and
while the data can be encrypted, such loss could be very dangerous for someone who needs
medical help. Databases also help to improve health care because they make epidemiological
research easier. But for legal, practical and other reasons, patients will often not be able to
change or delete information about them. For example, a diagnosis made by a doctor should
not be changed by the patient, because the doctor is held responsible to create a professional
diagnosis report, and the patient record is the place where his report is stored.

So much private, personal information about you in some database that you cannot control
may be bad enough, but it is only the beginning. Just imagine if all those different databases,
all your email and phone communications, your credit card and banking transactions, your
online video, music and book orders, your calendar, all your movements in the public transport
or on the road, your fingerprint, the people you have contact with, and finally your medical
records are all linked together. Yes, that is right, linked together to get one big picture of all
that is you. That is possible with today‘s technology and databases in the Netherlands. New,
advanced computer programs will be able to make an estimate of your role and activities in the
social networks you are part of, and will be able to make better predictions on your behaviour
than you yourself would be able to. And all that data is collected on you, without you being in
control. That is our situation in the Netherlands, anno domini 2010.

Of course, no institution has the legal authority to combine all those data sources and to
access all that information about you. Maybe the secret service, but who knows. One of the
nice properties of digitised data is that it can be stored indefinitely, replicated without limits,
and sure you feel fine about your data being stored indefinitely, without being in control,
without knowing for absolutely sure how that data will be used in the future.

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So, our government has a huge responsibility, one it might not be able to handle. I feel that
such a responsibility should be felt deeply within the government. They should not create
databases when it is not absolutely necessary. The database containing the fingerprints of all
Dutch citizens does not provide much confidence. Nor does the plan to store all public
transport usage information of individuals for seven years. The EPR is no exception to this: the
web application that would enable patients to see which doctors and institutions did access
their records is not yet ready, but despite that fact, the government wants to roll out the EPR as
soon as possible.

All data communications for the EPR are secured and encrypted, but the data stores are not.
With yesterday‘s technology, it is possible to create additional levels of security that make it
much, much harder to steal medical records or to gain unauthorised access. Those technologies
should be used for such sensitive data as medical records. Fairly good is not good enough. It
should be excellent, because it should be secure even in the technological world of tomorrow.
And yes, I understand that doctors want to be able to access the medical records in cases such
as emergencies or when the patient is not conscious and cannot give access himself. But giving
them the possibility to just gain access to any record by default is wrong.

I like the EPR and its potential possibilities. But I would rather control the data myself, or at
least see a more secure implementation with encrypted storage and biometric access controls.
Governments are not aware of their moral responsibility in an increasingly technological world
which they fail to understand. I am not sure how corporations will compare with projects such
as Google Health and Microsoft Health Vault. It often comes down to usability for the masses,
what makes corporate designs similar to governmental designs. We might need a completely
new, open, secure design for sharing and controlling this kind of personal data.

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