Management of Information Systems
1 Introduction ........................................................................................................................ 1
1.1 DIKW piramide................................................................................................................................... 1
1.2 E-Health ............................................................................................................................................. 1
1.3 Elektronische Medical Record (EMR) ................................................................................................ 2
1.4 Some trends....................................................................................................................................... 2
1.5 “Secondary use” of data .................................................................................................................... 4
1.6 Challenges to the use of health data for person centered care and re-use of health data for clinical
research ......................................................................................................................................................... 5
1.7 Challenges – interoperability ............................................................................................................. 5
1.8 M-health ............................................................................................................................................ 7
2 Data quality of electronic medical records ........................................................................... 9
2.1 Introduction: some contradictions in the literature.......................................................................... 9
2.2 Quality triangle .................................................................................................................................. 9
2.3 Relation between EHR and EHR data ................................................................................................ 9
2.4 Quality of EHRs and EHR data ......................................................................................................... 10
2.5 Software .......................................................................................................................................... 10
2.6 Software quality .............................................................................................................................. 11
2.7 Data quality ..................................................................................................................................... 14
2.8 Example: data quality assessment of congestive heart failure outcome data at the hospital Del
Mar Barcelona ............................................................................................................................................. 16
3 Introduction to databases ................................................................................................. 17
3.1 Database .......................................................................................................................................... 17
3.2 Database management system (DBMS) .......................................................................................... 17
4 Opportunities and challenges for learning from health data ............................................... 20
4.1 Context, and the learning health system ........................................................................................ 20
4.2 Opportunity: patient engagement .................................................................................................. 21
4.3 Opportunity: big data architectures for research ........................................................................... 22
4.4 Challenge: interoperability and standards ...................................................................................... 23
4.5 Challenge: data quality .................................................................................................................... 24
4.6 Challenge: winning public trust ....................................................................................................... 25
5 Data protection in health and the GDPR ............................................................................ 26
5.1 Why health data needs special data protection ? ........................................................................... 26
5.2 Right to privacy and the GDPR ........................................................................................................ 26
5.3 Definition of personal data .............................................................................................................. 27
5.4 Definition of Health data and genetic data ..................................................................................... 27
, 5.5 Lawful basis for processing health data or when are you allowed to process health data? And
under what conditions ? .............................................................................................................................. 28
6 Information security .......................................................................................................... 29
6.1 CIA triangle ...................................................................................................................................... 29
6.2 Security ............................................................................................................................................ 30
6.3 Phishing, malware and CEO fraud ................................................................................................... 31
7 Secondary use of data in healthcare and research .............................................................. 31
7.1 Helical Innovative Training Network: an insight.............................................................................. 31
7.2 Rare Disease Registries: structure, challenges and tools ................................................................ 32
7.3 Exchanges with patient representative organizations and their importance in research and data
sharing34
7.4 GDPR and COVID: did the Regulation meet expectations and stand the test................................. 35
7.5 The Data Governance Act: an answer to the problem? .................................................................. 35
7.6 A proposal: Thesis in overview ........................................................................................................ 36
8 Digital innovations in healthcare ....................................................................................... 36
8.1 Start of the NeoParent project ........................................................................................................ 36
8.2 Short introduction mHealth ............................................................................................................ 37
8.3 Background and objectives of the NeoParent project .................................................................... 37
8.4 User centered design approach to build a mHealth app................................................................. 37
8.5 Pilot study in 4 neonatal intensive care units (NICU’s) ................................................................... 38
8.6 Valorization of the NeoParent app .................................................................................................. 38
9 Business intelligence in healthcare .................................................................................... 39
9.1 Cycle data analysis ........................................................................................................................... 39
9.2 Example advanced analysis: planning tool bed capacity during COVID 19 ..................................... 42
9.3 Types of information: example questions (re)admissions .............................................................. 43
9.4 Conclusions ...................................................................................................................................... 44
,1 Introduction
“Information systems (IS) are the means by which people and organizations, increasingly utilizing
technology, gather, process, store, use and disseminate information”
1.1 DIKW piramide
Different levels:
- Data is raw, is not been interpreted yet (e.g. 10/6 can be
everything data, blood pressure…) you need to
know the meaning
- When you know the meaning, you can speak of
information (e.g. now you know it’s the blood pressure)
- Knowledge: if you know the context (‘type of patient
with 10/6’), you can expect these values (dogmative values are known)
- Wisdom: you have a specific knowledge, but what do you do in the future… You apply your knowledge
On the lower level you see what we mean by data. So if we talk about data it is purely. If I mentioning red,
it can be anything (it’s purely the data). If I say that we provide you with some more information meaning
the traffic light is on red, we need a context to derive that information but it can be derived from the data.
A level above that Is the knowledge meaning that if the traffic light is on red, we all know as a driver what
to do or not to do. The top level is the wisdom that based on the data, information and knowledge when
you’re on that level you know you better stop the car in this case.
1.2 E-Health
- E-health is the database were people’s medical information are stored from general practitioners and
hospitals. It’s like a big database that health providers can open to know something about their
patients. It’s connected to your social security number (rijksregisternummer).
a very good example of a specific use case of e-health, but e-health is a bit broader in context
- Wearables are part of the e-health domain, M-health is a specific subdomain of e-health and mhealth is
specifically addressing wearables.
General definitions and explanations:
- You may think that e-health is rather new because we often hear it on the news, but It’s not. The first
time use of the term e-health is in 1999… Already more than 20 years!
- Overarching term for medical informatics, health informatics, telematics, telemonitoring, tele medicine
- “e-health is the use of emerging information and communications technology (ICT), especially the
Internet, to improve or enable health and healthcare.”
- “e-health is an emerging field of medical informatics, referring to the organization and delivery of
health services and information using the internet and related technologies. In a broader sense, the
term characterizes not only a technical development, but also a new way of working, an attitude, and a
commitment for networked, global thinking, to improve health care locally, regionally, and worldwide
by using information and communication technology” (Eysenbach, aangepast)
o Many of the people that are talking about e-health or if we ask to define e-health, we think about
technologies in healthcare. We think about using computers, tablets, wearables, applications or
similar things, which is right. But e-health is not only about technology, it’s also a new way of
working. It’s about workflows within a hospital that are redesigned, new business models…
o What to remind about the definition?: If you talk about e-health it’s about using IT, technologies,
computers, internet within a healthcare setting, but it’s not purely about technology! It’s about
another way of working, other work flows, business models that have to be remodelled or that we
use in health care based on those technologies.
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, 1.3 Elektronische Medical Record (EMR)
EMD systemen bevatten elektronische informatie over de gezondheidstoestand van de patiënt
Verschillende termen worden in de literatuur gebruikt:
- Electronical Medical Record (EMR) = Elektronisch Medisch Dossiersysteem (EMD)
o This a kind of database, software the general practitioner or physician is using in order to collect
and store medical and clinical information about the patient and is not a kind of information that is
typically exchanged/shared with other professionals or which is most of the time kept locally.
Keeping it locally means that e.g. the doctor is storing the information on their computer
o In addition of some administrative information (you need to know where the patient is living)
o Health care professional is in charge of the information inside
- Electronical Patient Record (EPR) = Elektronisch Patiënten Dossier (EPD)
o This is a broader, more general term than EMR. It’s not only doctors who are using software or
databases in order to store patient information. You have also nurses, dentists, physiotherapists.
o An electronic patient record does not only have to contain purely medical information, it can also
be information that a physiotherapist needs for his or her treatment. It can also be information
that the nurse is collecting about the patient.
o Health care professional is in charge of the information inside
- Electronic Health Record (EHR)
o Is typically designed for sharing the information about the patient
o Health care professional is in charge of the information inside
o 2 differences between an EHR and an EMR
1) Content aspect: where a Electronical Medical Record (EMR) only contains most of the time
purely medical, clinical information in addition of some administrative information
Electronic Health Record (EHR) doesn’t only contain information about the health of the
patient, but it can also contain information about the lifestyle of the patient
2) Sharing aspect: EHR is typically designed for sharing information between systems. The EHR
can contain information that is physically stored on a number of locations. So it could contain
information that is coming from a GP, hospital which can be collected in a kind of electronic
health care record EMR: not a kind of information that is typically exchanged/shared with
other professionals or which is most of the time kept locally
- Personal Health Record (PHR)
o This is typically owned by the patient (biggest difference with the above). The patient can see the
PHR and can add information to that, the patient is able to exchange information
o The PHR can also be used when you make appointments with your GP, physicians.
1.4 Some trends
EMRs have evolved over time. We see a lot of evolution. For all kinds of records, we see the same trends:
- Patient-“centered”:
o Information systems are more patient centered, we really put the patient in the center of their
management of healthcare. Patient empowerment is involving the patient. Many years ago when
a patient was visiting a physician you could say that communication was more an one-way
communication (treatment, surgery, medication the patient just agreed). Now we see that the
patient is more involved in their treatment plans and everything is more discussed with the
physician. This is very beneficial for the patient.
- Longitudinal:
o There is often a long standing history between physician and the patient
o You go to the physician when you have a flu or other medical problems and each of those episodes
are collected/stored within the ER and can be retrieved when necessary. Longitudinal episodes of
providing care to a patient can be recorded.
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