DATA SHARING PRACTICE AT UGANDA NATIONAL HEALTH LABORATORY

SERVICES

“BY”

NAKIWALA STACEY

“19/U/LIS/14849/PE”

“A RESEARCH PROPOSAL SUBMITTED TO THE DEPARTMENT OF LANGUAGES

AND COMMUNICATION IN PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE AWARD OF A DIPLOMA IN LIBRARY AND INFORMATION SCIENCE OF
KYAMBOGO UNIVERSITY”

MAY 2022
 “CHAPTER ONE”

“INTRODUCTION”

1.0 Introduction

“ This chapter presents the background to the study, statement of the problem, purpose of the
study, study objectives of the study, research questions, scope of study, significance of the study,
definition of key terms”

“ 1.1 Background to the study”

“ Data sharing from clinical perspective has the potential to generate more and better science, and
to enable more efficient use of research resources (Bull, 2015). For these reasons, sharing data
has become a core requirement for biomedical research. In addition The Council for International
Organizations of Medical Sciences (CIOMS) states that “researchers, sponsors, and research
ethics committees (RECs) must share data for further research where possible (CIOMS, 2016

Sharing data is also regarded as best practice by the WHO and other professional organizations.
Although data-sharing is valuable, it raises important cultural, ethical, financial, and technical
challenges (Taichman, 2017). These include finding the right balance between making data
accessible and safeguarding privacy, ensuring access, determining authorship, and protecting
intellectual property (Van Panhuis et al., 2014).

A study on global data sharing expressed concern that these challenges may be greater in low-
and middle-income countries (LMICs) because of perceived disparities in decision-making
between primary data producers and secondary data users (Alter, 2015).

Data is the information at the heart of all scientific research. The practice of enabling scientific
data sharing and re-use is a central tenant of doing good science. In the past few decades,
scientific research has largely transitioned from the historical practice of lone researchers
producing the majority of new discoveries, to the present time where science has become a data-
intensive and collaborative process. This transition has been enabled by the fast pace of
development of new technologies that allow for the capture of large data sets via sophisticated
computing power. The increasing complexity of conducting scientific research projects, and the

2
resulting large data sets, require researchers with various types of expertise to work together, and
thus share data (Tenopir et al., 2011)”

According to Martone et al. (2018) data sharing is the publication of the primary data and any
supporting materials required to interpret the data acquired as part of a research study. However,
data sharing is not only about publishing the research data for easy access. Several studies have
shown that sharing research data via emails and portable devices such as memory sticks or CDs
is still practiced (Wiley, 2014).

Tenopir et al. (2015) provides a broader definition of data sharing as the activity when a scientist
or researcher makes their data available to others for use in research and other related activities.
Dietrich et al. (2014) adds that researchers should not just share data among themselves without
taking into account the legal and ethical considerations. Data sharing, therefore, is the practice of
making research data available to others taking into account the legal and ethical implications
associated with its sharing.”

Laboratory services in Uganda are regulated under the Allied Health Professionals Act of 1996.
The Act mandates the Allied Health Professionals Council (AHPC) to register and license all
laboratory professionals before they can practice. The council is also empowered under the same
Act to register and license all laboratories, public, private as well as private not for profit
facilities.

The national health laboratory services within Uganda are diverse and they mirror the health
services levels. The range of services rendered varies from the most basic at Health Centre
Levels Ill and IV, through general hospital and regional referral hospital laboratories to national
reference laboratories.

1.2 Statement of the problem

The problem is that there are low levels of data sharing at national Health laboratory services yet
it is important in the activities that it provides. Research increasingly argues for additional
empirical studies to explore data sharing efforts from diverse aspects, including studies to
identify specific elements that affect data sharing practices, comparative studies to understand

3
sharing between diverse disciplines, and exploratory studies to gain insight from those who
successfully share data (Haeussler, 2011)”

Shared data allow researchers to build on fellow researchers’ work to achieve timely results. As
research in science, becomes increasingly data intensive, digital data that scientists store are
increasing in volume, driven as an outcome of study simulation, observation, and
experimentation. This study therefore intends to establish the data sharing practices at Uganda
National Health Laboratory services.

1.3 Purpose of the Study

To explain the data sharing practices at Uganda National Health Laboratory Services

“ 1.4 Specific Objectives of the Study”

“ This study shall be based on the following specific objectives ;

”

i. “ To assess the current data sharing practices at Uganda National Health Laboratory
Services
ii. To examine the challenges of data sharing at Uganda National Health Laboratory
Services
iii. To suggest strategies for improving data sharing at Uganda National Health Laboratory
Services

“ 1.5 Research Questions ”

The study shall be guided by the following research questions;

i. What are the current data sharing practices at Uganda National Health Laboratory
Services
ii. What are the challenges of data sharing at Uganda National Health Laboratory Services
iii. What are the strategies for improving data sharing at at Uganda National Health
Laboratory Services.

4
 “1.6 Scope of Study”

“1.6.1 Content Scope”

The study shall majorly look at the current data sharing practices at Uganda National Health
Laboratory Services, the challenges of data sharing at Uganda National Health Laboratory
Services strategies for improving data sharing at at Uganda National Health Laboratory Services

“ 1.6.2 Geographical scope”

“ This study shall be carried out at Uganda National Health Laboratory Services located at Old
Butabika, Kampala.

“ 1.6.3 Time Scope”

“ The study shall be conducted for the period of one academic year July 2022 to 30th June 2023.

“ 1.7 Significance of the Study”

“ The following categories of people shall benefit from this study; ”

“ Researcher: The researcher by taking on this study, will be awarded with diploma in Library and
Information Science.

The institute of Uganda National Health Laboratory Services: The institute will come to know
the value of data sharing similarly, management shall be in position to address the issues and
challenges faced in data sharing . ”

Government. The government will appreciate the importance of data sharing and hence can
facilitate further in relation to funding. It will important to the government in terms of
intervention with certain polices and resources to assist students with visual impairments in the
University.

Other researchers. The study will prompt more researches in the area having contributed to
literature and methodology for such future studies.

Global knowledge. The study will also contribute to the global knowledge in terms of literature
and methodology used.

5
1.8 Definitions of Key Terms

“ Data sharing. Data sharing refers to the “release of research data for use by others” (Wikipedia,
2021) ”

“ Research data. Research data include any form of data obtained by researchers that is accepted
or retained in scholarly communication in order to produce original research outcomes or to
validate research findings. These data include such information as research techniques and
materials (Encyclopedia (2021),) ”

Health Laboratory services. Health laboratory services are biological, microbiological,

immunological, chemical, immuno-hematological, biophysical, cytological, pathological
technologies for examination of materials derived from the human body for diagnosis,
prevention, and treatment of disease or assessment of the health of human beings (MoH, 2009).

6
 CHAPTER TWO

LITERATURE REVIEW
2.0 Introduction

This chapter is guided by specific objectives as written in chapter one

2.1 Current data sharing practices in Health Laboratory Services

Willingness to share data. Frequently mentioned in the literature were the factors age,
nationality, and seniority in the academic system. Enke et al. (2011), for instance, observe that
German and Canadian scientists were more reluctant to share research data publicly than their
US colleagues (which raise the question how national research policies influence data sharing).
There is an influence of the researcher’s age on the willingness to share data. Accordingly,
younger people are less likely to make their data available to others.”

There is Degree of control. A core influential factor on the individual data sharing behavior can
be subsumed under the category degree of control. It denotes the researcher’s need to have a say
or at least knowledge regarding the access and use of the deposited data. Eschenfelder and
Johnson (2011) suggest more control for researchers over deposited data. According to some
scholars, a priority right for publications, for example an embargo on data (e.g., Van Horn and
Gazzaniga, 2013), would enable academic data sharing”

Resources needed. Here we subsume factors relating to the researcher’s investments in terms of
time and costs as well as their knowledge regarding data sharing. Too much effort was a blunt
answer we found in our survey as a response to the question why researchers do not share data.
In the literature we found the argument time and effort 19 times and seven times in the survey.
Besides the actual sharing effort (Acord and Harley, 2012; Enke et al., 20110 scholars utter
concerns regarding the effort required to help others to make sense of the data.

“Data sharing culture. The literature reports a substantial variation in academic data sharing
across disciplinary practices (Milia et al., 2012). Even fields, which are closely related like
medical genetics and evolutionary genetics, show substantially different sharing rates. Medical
research and social sciences are reported to have an overall low data sharing culture (Tenopir et

7
al., 2011), which possibly relates to the fact that these disciplines work with individual related
data.”

Standards. When it comes to the interoperability of data sets, many scholars see the absence of
metadata standards and formatting standards as an impediment for sharing and reusing data;
lacking standards hinder interoperability (e.g., Axelsson and Schroeder). However, there were no
references in the survey for the absence of formatting standards”
”
Returns. Within the examined texts we found 26 references that highlight the issue of missing
returns in exchange for sharing data, 12 more came from the survey. The basic attitude of the
references describes a lack of recognition for data donors (Daiglesh et al., 2012) Both sources –
review and survey – argue that donors do not receive enough formal recognition to justify the
individual efforts and that a safeguard against uncredited use is necessary. The form of
attribution a donor of research data should receive remains unclear and ranges from a mentioning
in the acknowledgements to citations and coauthorships”” (Enke et al., 2011)”

“Data donor’s organization. An individual researcher is generally placed in an organizational

context, for example a university, a research institute or a research and development department
of a company. The respective organizational affiliation impinges on his or her data sharing
behavior especially through internal policies, the organizational culture as well as the available
data infrastructure”. “Huang et al. (2013, p. 404) for instance, in an international survey on
biodiversity data sharing found out that” “only one-third of the respondents reported that sharing
data was encouraged by their employers or funding agencies”. “The respondents whose
organizations or affiliations encourage data sharing were more willing to share””

“Funding agencies. Besides journal policies, the policies of funding agencies are named as a key
adjusting screw for academic data sharing throughout the literature (e.g., Enke et al., 2011;
Wallis, 2013). Huang et al. (2013) argue that making data available is no obligation with many
funding agencies and that they do not provide sufficient financial compensation for the efforts
needed in order to share data. Perrino et al. (2013) argue that funding policies show varying
degrees of enforcement when it comes to data sharing and that binding policies are necessary to
convince researchers to share.”

8
2.2 The challenges of data sharing in Health Laboratory Services

“ Sharing research data is a challenging task, whether for the data providers or human mediators.
There are certain challenges, both technical and social, that need to be addressed by the human
workers in any examination of research data access and sharing regimes (Arzberger et al., 2004).
”

“ The technological challenges of data sharing are predominantly rooted in developing, applying,
and adopting information and communication technologies, such as cyber infrastructure,
repository, metadata, and various tools that enable broad access to and optimal exploitation of
research data (Kowalczyk & Shankar, 2011).
”

“ These types of challenges are usually the result of the nature of data. For example, for ecological
informatics, the three major technological challenges are data dispersion, heterogeneity, and
provenance (Jones, 2011). Although large amounts of scientific data have been digitized and
stored somewhere on the Internet by tens of thousands of researchers, these data “remain
scattered, poorly documented, and in formats that impede discovery and integration” (Parr et al.,
2012).

“ One explanation for the data heterogeneity that makes it difficult to compare and integrate
different data sets is the variety of experimental methods researchers use to collect data across a
wide range of topics. The challenge of capturing information about data provenance (i.e., origin
and history), especially after data have been subjected to complex and multistep processes during
collection and/or analysis, may cause concern about data quality. These challenges need to be
addressed by new and powerful technological solutions (Reichman et al., 2011).

Difficulties in establishing and maintaining collaboration and cooperation among human actors
lay at the core of the social challenges faced by data sharing, reminiscent of work patterns and
content of the human infrastructure of cyber infrastructure.

“ One response to these challenges is the effort of domain experts in building communities of
cooperation and promoting a culture of community within them (Parr et al., 2012). In these
communities, the research scope of members might go beyond that of the human infrastructure
of cyber infrastructure and thus researchers with broader interests are also included”.

9
These social challenges can be understood at two levels: macro and micro. Macro level social
challenges include cultural, institutional, organizational, law, policy, ethical, financial and
budgetary, and managerial and require addressing when data sharing facilitators develop and
maintain data sharing knowledge infrastructures (Kowalczyk & Shankar, 2011).

“ Micro level social challenges include motivation of individual actors as data providers to share
data, and as data users to use data. These two level of challenges are not exclusive, but intertwine
and influence one other. For example, the variety of institutional models and tailored data
management approaches that are most effective in meeting the needs of researchers, and laws,
policies, and agreements directly affect data access and sharing practices by individual actors ”

(Arzberger et al., 2004).

2.3 Strategies for improving data sharing in Health Laboratory Services

“Knowledge infrastructure. The term “knowledge infrastructure” builds on the earlier

” “

development in e-Research movements and information infrastructure (Borgman, 2015).

Transformed from information infrastructure (Bowker, Baker, Millerand, & Ribes, 2010),
knowledge infrastructures refer to “robust networks of people artifacts and institution that
”

generate, share, and maintain knowledge about human and natural worlds” (Edwards, 2010)
“

Knowledge infrastructures include seven elements–people (individuals), shared norms and

values, artifacts, institutions (organizations), routines and practices, policies, and built
technologies – all of which work together as a complex ecology (Edwards et al., 2013) ” ”

“ Scholars use Knowledge infrastructure to make sense of knowledge-sharing mechanisms. Ribes

and Finholt (2009) used KI to evaluate how projects are run and how knowledge is preserved.
They conducted a series of case studies on four national research projects on infrastructure
development in the digital environment: Following the KI framework, the authors examined and
compared these four projects based on their facility, community interests, technological
readiness, and production quality systems”

“ Cyber infrastructure is a typical knowledge infrastructure consisting of networked

computational tools, resources, and collaborative efforts, focusing on supporting scientific
research activities (e.g., interdisciplinary collaboration, data sharing, dissemination of findings)
(Ribes & Lee, 2010; Atkins, 2003). Cyber infrastructure’s major mission is to revolutionize

10
science, with communities of researchers as its target (Atkins, 2003; Ribes & Lee, 2010). These
infrastructures provide scientists the features they need to answer their research questions (Bietz,
Baumer, & Lee, 2010)”

“ Building a community repository that could be populated with data from scientists and other
databases was the key activity when creating infrastructure in the CAMERA project (Bietz et al.,
2010). Bietz et al. (2010) discovered that the processes of building the community repository not
only included technical level activities (e.g., building scripts), but also required establishing and
managing a complex set of social-technical relationships. Furthermore, they found that technical
and social-technical level activities need project members (e.g., database developers) to align and
leverage the relationships within and across multiple organizational structures”

“ 2.4 Research gap ”

“ Based on the literature review no study has been carried out on data sharing practice at uganda
national Health laboratory services. A gap the current study intends to address ”

11
 CHAPTER THREE

METHODOLOGY

3.0 Introduction

The chapter covers the research design, population of the study, sample and sampling techniques,
data collection methods and tools, data presentation and data analysis, data quality and ethical
consideration.

3.1Research Design

According to Creswell, (2003), a research design is a detailed plan which guides the study. The
study shall be carried out using a case study research design with specific reference to Uganda
National Health Laboratory Services. A combination of quantitative and qualitative approaches
will be used to generate statistical data and descriptive information respectively. Quantitative
research helps in getting an in-depth analysis of the problem under investigation and quantitative
research will be applied in order to describe current conditions.

3.2 Population of the study

Mugenda & Mugenda (2005) defined a study population as consisting of the total collections of
elements about which the study wants to make some inferences . The study population will
include librarians and students with visual impairment. The overall total population will be25.

3.3 Sample and Sampling techniques

Illustrating the sample size

Category Population Sample size Method

Employees 20 17 Purposive random sampling

Management officials 5 3 Purposive random sampling
Total 25 20

From the above table, the study will use a sample size of 20

12
3.3.1 The sample size

A sample size refers to a subset of the population (Collis and Hussey, 2013). Sample size will be
20 respondents.

3.3.2 Sampling techniques

Two sampling techniques shall be used.

3.3.2.1 Purposive sampling technique

Purposive sampling is a non-probability sampling method and it occurs when “elements selected
for the sample are chosen by the judgment of the researcher (Brink, and Rensburg, 2012).
Researchers often believe that they can obtain a representative sample by using a sound
judgment, which will result in saving time and money”. Purposive sampling technique will be
used to select respondents from management because they possess the best information required
for the study.

3.3.2.2 Simple random sampling technique

A simple random sample is a subset of a statistical population in which each member of the
subset has an equal probability of being chosen. This will be used to select employees.

3.4 Data collection methods and tools

3.4.1 Data collection methods

3.4.1.1 Questionnaire

According to Babbie and Mouton (2011) a questionnaire is a document containing questions and
other types of items designed to solicit information appropriate to analysis. The questionnaires
will consist of both closed and open-ended questions. The open-ended questions will intend to
permit greater depth of responses by stimulating the respondents to give an insight into their
feelings and opinions. The questionnaires will be chosen as a way of collecting data from
respondents because it is easy to administer and obtain data within a short time from a large
number of respondents that is employees of Uganda National Health Laboratory services.

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3.4.1.2 Interviews

According to Holstein and Gubrium (2013) an interview is an in-depth conversation between the
participants and the researcher. Unstructured interviews will be conducted to different
respondents. Interviews will be used because they have the advantage of ensuring probing for
more information, clarification and capturing facial expression of the Interviewees. They will be
administered to management respondents like supervisors and heads of department.

3.4.2 Data collection tools

3.4.2.1 Questionnaire

The researcher will use structured and semi structured questions. The question will be printed in
simple language possible to be understood by respondents. The structured question will be
formulated and will be given to respondents from the organisation. The questionnaires will be
used on the employees.

3.4.2.2 Interview guide

An interview guide will be used to collect data from the respondents. Interviews will be intended
to involve face to face discussions between the researcher and the interviewer. This technique
will allow the researcher to fully get involved in studying to respondents. The interviews will be
used on management respondents.

3.5 Data presentation and analysis

3.5.1 Data Presentation

Data will be presented in form tables, graphs and pie charts.

3.5.2 Data analysis

Analysis means the detailed examination or study of something in order to understand more
about its substance and to find out what it consists of (Ogunbameru and Ogunbameru 2010).
Data will be analyzed both qualitatively and quantitatively.

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3.6 Data quality control

3.6.1 Validity

Validity indicates the degree to which the instrument measures the constructs under investigation
(Mugenda and Mugenda, 2003). This study will use content validity because it measures the
degree to which the sample of the items represents the content that the test is designed to
measure. Before processing the data, the questionnaires will be checked for completeness and
consistency by the supervisor to approve.

3.6.2 Reliability

Reliability is the degree of consistency (Mugenda and Mugenda, 2003). A pilot study will be
conducted by the researcher by administering the questionnaires to Uganda National Health
Laboratory Services. From the pilot study, it will be possible to detect questions that needed
editing and those with ambiguities. The final questionnaires will then be printed and dispatched
to the field for data collection, and will be collected after two weeks.

3.7 Ethical consideration

An introductory letter will be obtained from Head of Department of Library and Information
Science of Kyambogo University introducing the researcher to the study area seeking permission
to collect data. The researcher will obtain permission from the administration to allow her
conduct research thereafter shall seek consent of the respondents.

3.8 Limitations and delimitations

Confidentiality. Most of organizations hesitate on the provision of their data, so they may not
provide adequate and sufficient data. Therefore, the researcher will assure the management that
data that provided will be used for research purpose only, and will not be disclosed to anyone not
involved in this study.

Sensitivity of respondents. The interest of the respondents to participate in the study is also
likely to affect the study especially the management and other employees at Uganda National
Health Laboratory Services claim to have a tight schedule. However this will be solved by
making them with clear appointments.

15
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 APPENDICES

Appendix 1: Questionnaire for respondents

Dear respondent,

My name is NAKIWALA STACEY a student of Kyambogo University pursuing a Diploma

Degree in Library and Information Science. I am carrying out research on the topic entitled
“DATA SHARING PRACTICE AT UGANDA NATIONAL HEALTH LABORATORY
SERVICES”. You have been identified as a resource person who can provide me with
information on this topic. I request for your time to answer my questions. Any information
provided shall be used for this research purposes only and shall be kept confidential.

SECTION A. Bio-data information, (tick the appropriate)

1. Sex

Male

Female

2. Age

25-30 31-25

36-40 Above 40

3. Your highest level of education

Certificate Diploma Degree

Masters PhD Others ………………………….

4. For how long have you been working with this institution?

1 -5 years 6-10 years 11-15 years

Above 16 years

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Section B: The current data sharing practices at Uganda National Health Laboratory
Services

5. Which of the following data sharing practices are available at Uganda National health
laboratory?

The Resources are provided for data sharing

There is data sharing culture

There is Degree of control.

Willingness to share data

There are standards

There are Funding agencies for data sharing

Any other specify……………………………………………………………………………

………………………………………………………………………………………………….

Section C: the challenges of data sharing at Uganda National Health Laboratory Services

Limited financial and human resources

Lack of enough facilities

Lower levels of technology

Any other specify……………………………………………………………………………

………………………………………………………………………………………………….

Section D: Strategies for improving data sharing at Uganda National Health Laboratory
Services

7. What can be used to improve data sharing at this organisation?

………………………………………………………………………………………………….
………………………………………………………………………………………………….
………………………………………………………………………………………………….
Thank you for your time

21
 Appendix II: Interview Guide for respondents

Dear respondent,
My name is NAKIWALA STACEY a student of Kyambogo University pursuing a Diploma
Degree in Library and Information Science. I am carrying out research on the topic entitled
“DATA SHARING PRACTICE AT UGANDA NATIONAL HEALTH LABORATORY
SERVICES”. You have been identified as a resource person who can provide me with
information on this topic. I request for your time to answer my questions. Any information
provided shall be used for this research purposes only and shall be kept confidential.

1. What are the current data sharing practices at Uganda National Health Laboratory
Services
2. What are the challenges of data sharing at Uganda National Health Laboratory Services
3. What are the strategies for improving data sharing at at Uganda National Health
Laboratory Services

Thank you for your time

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