A Framework for and Issues in the Management and
Governance of Data on Elderly Citizens (Ongoing Res.)
Tomi Dahlberg
Turku Business School at University of Turku
Rehtorinpellonkatu 3
FI-20014 University of Turku, Finland
+358 50 550 5718
tomi.dahlberg@utu.fi
ABSTRACT
A research project involving researchers from European Union,
Japan and the US has been discussed under the title “Governing
Aging Society”. The governance of data on elderly citizens is seen
as one research topic within that project. The current situation is
characterized by a dilemma. Potentials offered by the mining,
analysis, visualization, etc. of data can be used to manage the
societal impacts of aging and to provide new innovative services
to elderly citizens. On the other hand, fragmentation and flaws in
data interoperability and transfer seriously undermine these
potentials. This paper proposes a framework for the governance of
data on elderly citizens. The focus is on the framework as a
whole; in its background and ability to capture data categories,
data attributes and data sources. Attention is also paid to the
ontological nature of the framework. Work to specify each
element of the framework in detail and the use of it is left to
ongoing research and the research project under discussion.
Categories and Subject Descriptors
K.6.0 [Computing Milieux]: Management of Computing and
Information Systems –general
General Terms
Experimentation, Management, Reliability, Standardization
Keywords
Governance of Data; Data Management; Data on Elderly Persons;
Healthcare Information; Ongoing Research
1. INTRODUCTION
The use of IT and digital data are considered as means to provide
solutions to global problems of population aging [8]. Data mining,
analysis, visualization etc. techniques offer huge potentials to
improve healthcare, social welfare and other services provided to
elderly citizens. Data is also needed to support the development of
national healthcare and social welfare systems including programs
on population aging. Furthermore, data is needed by professionals
to develop, provide and manage specialized medical care, basic
healthcare, social welfare and other services to elderly citizens. In
addition to medical, social welfare and other professionals,
anonymized open data should to be made available to service
providers and elderly citizens themselves. It can then be used to
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develop new innovative services, which help elderly citizens to
improve their quality of life, monitor their health proactively and
participate longer to the activities of the society.
Currently the fragmentation and low quality of data as well as the
lack of widely used national and/or international data models,
ontologies, data message and other standards prevent electronic
data transfer and consolidation of data. This then undermines the
deployment of the above-mentioned potentials. Out of the 194
member states of World Health Organization (WHO) only 34
members were able to provide reliable good-quality health data in
2012 [4,5]. A major reason for this fragmentation is the fact that
healthcare, social welfare and other actors typically develop and
run their own patient/customer databases and own
patient/customer care information systems (IS). They register
medical measurement results, events, radiographs, prescriptions,
reports, case summaries, etc., and social welfare service actions,
decisions as well as other data into organization-specific ISs and
databases. Furthermore, they have non-similar and non-standard
procedures to create, register, modify and store data.
Although the above described data management challenges are
generic rather than limited to data on elderly citizens, population
aging creates additional challenges. The proportion and number of
elderly citizens not only increases but they also live longer. This
together with the fact that abilities to create, process and store data
have increased and continue to increase means that data on elderly
people abound in particularly many diverse data storages, both
public and private. Data explosion has produced new concepts
such as data ontologies [7], data monetization [9] and Internet of
things. Within the European Union (EU) citizens retire currently
at the age on 60-65 years. Although there are significant
differences between EU member states, retirement usually means
that health, medical, income etc. data collection ends in work
related service systems such as occupational health care and
human resource systems. After that new data on these citizens is
collected predominantly by public sector organizations - or by
private companies for wealthier retirees. A retiree could receive
pension from several funds. There are also changes in taxation,
social security, benefits and other practices triggered by
retirement. EU/country regulations stipulate that health and social
status related data on (elderly) citizens is subject to tight security
regulations with strong identification and that such data has to be
kept separate from less sensitive data. From the beginning of year
2014 EU citizens have the right to be forgotten. At the moment all
the implications of this directive are not clear, but it will impact
how data on elderly citizens can be used. All in all, development
of data management and governance for data on elderly people
will impact positively also data management and governance for
other population groups.
This article is written as a background paper to an intended EU-
Japan-US research project titled “Governing Aging Society”.
Where to locate data on elderly citizens, how to transfer and
consolidate data in order to provide services to elderly citizens,
how to mandate the use of personal data, how to protect privacy
and unauthorized use of personal data are some of the key data
management issues. They impact other aspects of governing the
aging society. This article proposes that it is necessary to start
from classifying data and information and their use situations.
Thus the first research questions of this article is: what types of
data exists on elderly citizens, what are the sources of such data,
and how could the identified types and sources of data be
integrated into a comprehensive framework? The second research
question is: how does the framework support the deployment of
data on elderly citizens in the various use situations of such data?
Section 2 discusses the theoretical background of the framework
proposed in section 3. The proposed framework draws from the
work of DAMA International [2,3] and Cleven and Wortman [1].
Section 4 addresses the ontology of framework and section 5
summarizes the research and draws conclusions.
2. THEORETICAL BACKGROUND
DAMA International’s efforts to establish data management
concepts [2,3] are probably the most acknowledged cumulative
work in the field. DAMA’s DMBOK starts by distinguishing data,
information and knowledge. Data is defined as the representation
of facts, such as text, numbers, graphics, images, sound or video
[2, pp. 2]. Data transforms into information when definition,
format, timeframe and relevance is added to data. Similarly
information transforms into knowledge when patterns and trends,
relationships, and assumptions are added to information. DMBOK
suggests that data lifecycle consists of seven phases. Plan, specify
and enable phases predate the existence of data. Data is processed
during create and acquire, maintain and use, archive and retrieve,
and purge phases [ibid. pp. 4]. The DMBOK framework identifies
ten data management functions [ibid. pp. 7] and seven
environmental elements [ibid. pp. 13]. The data governance
function is used to steer the other 9 functions. The mapping of
data management functions and environmental elements result in
a matrix called the DAMA-DMBOK functional framework [ibid.
pp. 15]. So-called context diagram is also crafted [ibid. pp. 18].
The DMBOK manual then devotes one chapter to each data
management function and its context diagram [ibid. pp. 37-334].
Although DMBOK and the related 260 pages DAMA dictionary
[3] are useful for understanding data management issues, these
documents have been written during the time when majority of
data was structured, internal to an organization and stored into
organizations’ internal (relational) databases. In addition to
transactions - with no chapter in the DBBOK manual - DMBOK
identifies reference and master data, document and content, and
meta-data as the categories of data. However, the relations
between data categories are not considered and the definitions for
them, especially for master data, reference data and meta-data, are
not adequate, as will be discussed in sections 3 and 4.
Furthermore, DMBOK does not consider sufficiently the role of
data sources such as basic (business) transactions, sensor data or
video streams. Finally, although the context diagrams aim to
describe the lifecycle of data, the use situations of data are not in
the scope of the DBBOK since it focuses on data management not
data use.
Cleven and Wortmann [1] designed Figure 1 to show the relations
of data categories and divided them into domain and meta-data
297
specific categories. They identified three generic high-level
domains: party (e.g. customer, vendor, employees, …), thing (e.g.
products, items, account, …) and location (e.g. site, functional
location, …). In addition to single domain, data can be multi-
domain, also called cross-domain. For example, providing home
care to an elderly person at her/his home and charging for that
service involves multiple domains. They are; party (=elderly
citizen), thing (=service, payment) and location (=site where the
service is provided).
Figure 1. Data Taxonomy by Cleven and Wortman
Hovenga [5] lists 8 areas of health data usage in the management
of national health systems. The first is evaluation and comparison
of health outcomes, which consists of transitioning to a digital
environment, computerizing existing systems, collecting data at
points of care, and use of data widely. The second is leadership
and governance, which includes the national strategic policy
framework, managing business processes, strategy health policy
frameworks with leaders and funders data needs, international
influences and implementation process coverage. The third
addresses healthcare financing with health insurance versus
government funding considerations, terminology and coding
systems, national health funding approaches, harmonization of
data collections when comparable data structures and
representations across all parts of the system are required (such as
care program decision making for elderly citizens). The forth is
health workforce, which contains health workforce data needs to
effectively support planning, health workforce roles, occupational
categories and definitions, health occupation classification
systems, unique identifiers for providers of care, workforce
registration and licensing, preparing the health workforce to work
ready, supervised clinical practices and clinical placements. The
fifth - medical products, devices and technologies - captures
device and technology types and uses, medical device regulations,
medical device nomenclature and unique data identifiers. The
sixth - health service delivery types and associated regulations -
deals with the harmonization of service delivery data, accessing
health care services, planning and managing resources and health
care service delivery (such as providing safe and good quality
healthcare, clinical governance and risk management to the
delivery of health service delivery), epidemiology management,
medication management, administration and risk management,
caring health services in the home, aged care services (such as
data needs for improving aged care services, assessing aged care
service needs and identifying care options, assessment tools to
aged care and associated data standards and roles, responsibilities
and accountabilities for aged care service delivery), community
and primary healthcare services, coordinated care and chronic
condition management (such as information system standards for
continuity of care, service delivery logistics and remote
connectivity), palliative care services, short and long-tem
residential home services and acute care service including first
response services. The seventh is information and research, which
consists of leaders and executives’ use of information and
research results, the information needs of other key decision
makers, and key concept variables and data standards. The eight -
sustainability issues and trends - addresses data use and various aspects of aging society – e.g. the development of
governance for environment and health, prevention and personal national programs or new services and devices.
responsibility, medical professionals and patients, etc.
2. Proposition 2: An agreed framework for data on elderly
Hovenga’ list shows the enormity of administrative healthcare citizens supports the identification of use situations of this
data usage and governance in general and for elderly citizens in data. Literature reviewed in Section 2 [4,5,6] offers a good
particular. By replacing words health information with social starting point for that.
welfare information one could create a similar list. Medical and
healthcare data is also used in clinical work, content and case
analyses, and in data mining and medical research [6]. The author
of this article concludes that, at the moment, there appears to be
no comprehensive model or framework, which captures health,
social, financial etc. data needed to govern aging societies.

3. FRAMEWORK FOR GOVERNANCE OF

DATA ON ELDERLY CITIZENS
Figure 2 proposes a framework for the governance of data on
elderly citizens. The framework draws on DMBOK [2,3] and
Cleven and Wortmann [1]. The framework extends the Cleven
and Wortmann framework by dividing (business) transactions into
transactions, cumulated analytical and reporting data, documents
and content. The proposed framework includes also other
attributes of data: internal – external combined with structured –
unstructured as well as a classification on the sources of data. The
framework extends the knowledge base reviewed in Section 2.
This article claimed above that there are needs to complete or
even redefine some concepts of DAMA DMBOK. DMBOK
defines data governance as “exercise of authority, control, and
shared decision-making (planning, monitoring, and enforcement)
over the management of data assets.” [3, pp. 85]. The author of
this article regards this definition too narrow for the governance of
data. Rather the work of the ISO/IEC 38500 standards family
should be followed in the project “Governing Aging Society”,
especially as the governance of data was taken on the agenda of
ISO/IEC JTC1 SC40 in their recent 2014 plenary in Sydney.
DMBOK defines business transaction as “an event involving the
exchange of products, money and/or information” [3 pp. 36]. I Figure 2. Governance Framework for Data on Elderly People
consider also this definition too narrow for describing transactions
involving elderly citizens. In these transactions, for example home
4. ONTOLOGICAL NATURE OF THE
service or monitoring of health status, the exchange of things or DATA ON ELDERLY CITIZENS
information does not always happen. Furthermore, transactions One of the big questions in data management is whether data is
should be considered to consist of basic transactional data, derived universally or contextually defined. Universally defined means the
transactional data (calculated/derived from other data attributes by acceptance of an assumption, that data can be defined
using business rules for this). Transactions can be current or unambiguously for all use situations. As an example, it is assumed
historical. Documents, content and even reports could be that the meaning of an elderly citizen can be defined (agreed) so
transactional when linked to (business) transactions. that it is always understood in the same way. Contextually defined
implies that the meaning of data depends on its use context. As an
Definitions on master data, reference data and metadata are also example, the meaning of an elderly citizen could be understood
considered insufficient. That is discussed in detail in Section 4. differently depending on culture, profession, time and other
An important question is, whether the framework shown in Figure characteristics of the context. My claim is that data is contextual. I
2 is generic or specific to elderly citizens? It is clearly generic but therefore conclude that efforts to remove the fragmentation of
also considered to be descriptive for data on elderly citizens. As data with efforts to develop universal data models and concepts
the average life expectancy in several EU countries is 80 years or are doomed to fail. A doctor, a home care professional, a service
more, this research assumes that a framework that fits to that provider of IT-enabled home cooking robot, or a tax authority see
context can be applied also in other contexts. This research makes the same elderly citizen from different perspectives and need
two future research related propositions for the research project different data. Despite of this, there could still be unified person
“Governing Aging society”: identifiers, ontologies and message standards to exchange data.
1. Proposition 1: A framework for data on elderly citizens should DMBOK follows the universally defined approach, which is
be agreed. The framework shown in Figure 2 is crafted to clearest in the definition of master data. DMBOK advocates for so
contribute to that. Future work where definitions on data called golden record (=single version of truth). Golden records
categories, their attributes and data sources are agreed will should be used in all data storages and information systems for
provide clarity on what kind of data is needed to govern the such data elements as customer (e.g. elderly citizen), service (e.g.

298
services to elderly citizens), financial data etc. I claim that it is
unlikely that medical experts and elderly patients, as an example,
understand medical data and processes in the same way. The
precise medical name of a certain type of dementia means very
little to an elderly patient or even her/his relatives. Their focus is
on how to live with the disease, limit its impacts on the quality of
life and slow down the progress of the disease. Similarly dementia
is too generic to medical and healthcare experts. Their interest is
in proper diagnosis, finding the right medication and in the
delivery of effective care.
Due to the described approach I regard DMBOK’s definitions for
master data, reference and meta data too narrow. As an example
DMBOK defines meta-data as “any data used to organize or
categorize other data, used for relating data to information both
within and beyond the boundaries of the enterprise. Usually it
consists of codes and descriptions of definitions” [3 pp. 165]. The
most important consequence of context dependent data approach
is that data management becomes largely dependent on meta data,
especially on the informational (=semantic and descriptive) meta
data. Semantic and descriptive meta data explain the meaning of
data in its various use contexts. This approach has been used for a
long time in international data transfer between financial
institutions and telecom operators. They have agreed with SWIFT
codes and telecom message standards - and related exchange of
keys and test materials - how to transfer data between banks and
telecom networks. At the same time transferred data is used in
local banking and telecom services, which have different data.
The data categories in the framework of Figure 2 as applied to
elderly citizens are:
 Meta data: informational meta data describes what data exists
on an elderly citizens, where it is and what it means
 Master data and reference data: describe shared data between
several data storages that are kept independent of transactions,
such as elderly citizen names, ids, addresses etc., medicine
classifications, medical person data, social worker data, etc.
 Transactions: several transactions on elderly citizens are
historical whether they are business transactions, reports,
documents or content. They include medical and social
welfare history, work history, etc. Current transactions are
pension withdrawals, taxation, purchases and medical and
social welfare transactions, sensor data included.
Data ontologies are another area that needs attention in the
research project “Governing Aging Society”. A wide variety of
artifacts are called ‘ontologies’ [7] such as terminologies,
information models and controlled vocabularies. Ontologies are
useful as they can be used to search and query heterogeneous data,
exchange data between applications, integrate data and represent
encyclopedic knowledge. Useful ontologies include the
identification of elderly citizens, for example with a global
personal ID, although this issue is politically very sensitive in
many countries. Ontologies are needed also to codify
prescriptions, medicines, diseases, and professions working with
elderly citizens both on national and international levels. Finally
ontologies are needed to agree process and functional procedures
for the various stages of data lifecycle in order to have consistent
and good quality data. World Health Organization, United
Nations, other international organizations, local governments,
ministries and local authorities have done this kind of work for
long times partly based on clear accountabilities and partly
overlapping. As described in Section 1, fragmentation of data
299
storages and information systems and other similar reasons have
undermined the usefulness of this work.
5. CONCLUSIONS
This article is the first effort to define data governance concepts
for the “Governing Aging Society” project. The research motive
is that data on elderly citizens is fragmented. Efforts are needed to
consolidate this data and to make it more transferable. This article
proposed a framework for the governacne of data on elderly
citizens and discussed the ontological nature of the framework to
enable that. By doing so this article also answered the two
research questions stated in Section 1.
This article suggests that it is necessary to define data categories,
data attributes and sources of data for data on elderly citizens as
the first step in improving the governance of this data. That is the
task of the proposed framework. Then the ontological nature of
data needs to be agreed, that is, whether data concepts are seen as
universal or as contextual. After those steps it becomes useful to
describe data uses and ontologies, and to experiment with them.
REFERENCES
[1] Cleven, A. and Wortmann, F. 2010. Uncovering four
strategies to approach master data management. Proceedings
of the 43rd Hawaii International Conference on System
Sciences. 10 pages.
[2] DAMA: The Data Management Association 2009. The
DAMA Guide to the Data Management Body of Knowledge
(DAMA-DMBOK Guide), First edition 2009. Technics
Publications, Bradley Beach, New Jersey.
[3] DAMA: The Data Management Association 2009. The
DAMA Dictionary of Data Management, 2nd edition 2011.
Technics Publications, Bradley Beach, New Jersey.
[4] Hovenga, E.J.S. 2013a. National Healthcare Systems and the
Need for Health Information Governance. In Health
Information Governance in a Digital Environment, E.J.S.
Hovenga & H. Grain eds. Studies in Health Technology and
Informatics, Volume 193. IOS Press, 3-23.
[5] Hovenga, E.J.S. 2013b. Impact of Data Governance on a
Nation’s Healthcare System Building Blocks.. In Health
Information Governance in a Digital Environment, E.J.S.
Hovenga & H. Grain eds. Studies in Health Technology and
Informatics, Volume 193. IOS Press, 24-56.
[6] Nahar, J., Imam, T. and Tickle, K.S. 2013. Issues of Data
Governance Associated with Data Mining in Medical
Research: Experiences from an Empirical Study. In Health
Information Governance in a Digital Environment, E.J.S.
Hovenga & H. Grain eds. Studies in Health Technology and
Informatics, Volume 193. IOS Press, 332-361.
[7] Rubin, D.L., Shah, N.H. and Noy, N.F. 2007. Biomedical
ontologies: a functional perspective. Briefings in
Bioinformatics, 9:1, 75-90.
[8] United Nations 2014. World Population Prospects: The 2012
Revision. United Nations, Department of Economic and
Social Affairs. Downloadable open data excel spreadsheet.
DOI=http://esa.un.org/wpp/WPP2012_POP_F13_A_
OLD_AGE_DEPENDENCY_RATIO_1564.XLS.
[9] Verma, D.C and Verma, P. 2014. Surviving the Data
Explosion. IEEE Press. John Wiley & Sons, Hoboken, New
Jersey