Stakeholder’s Perceptions of Value and Risks in Data Governance for

the Secondary Use of Health Data

Hannu Nieminen

, Rima Sermontyte-Baniule

and Nina Helander

Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland

School of Economics and Business, Kaunas University of Technology, Kaunas, Lithuania

Information and Knowledge Management, Tampere University, Tampere, Finland

Keywords: Health Data Governance, Secondary Health Data, Stakeholder Perceptions, Value Creation, Review.

Abstract: The study is a literature study assessing the value expectations and risks perceived by the different

stakeholders related to the governance of secondary use of health data. A key value expectation for all

stakeholders was found to be that data provides public benefits and “common good”, especially through

academic research. Especially for the researchers improvement of health equity in the society was also an

important value expectation. For patients and also for decisionmakers security and privacy related risks were

often mentioned. For all stakeholders the risk of stigma for different groups in the society and for the patient

herself was seen to be important. Constant and clear communication towards all stakeholders about what data

is collected, how it is used, what the expected benefits are and how the risks are managed needs to be a key

element of health data governance solutions. All stakeholders see the importance of involving also the patient

representatives to the governance of health data. Data governance should be developed towards a continuous

and transparent collaborative process, where all stakeholders voice is heard, and they can affect the decisions.

1 INTRODUCTION

Data is often referred as a key resource for creating

value at the level of individuals, organizations and

societies. Value creation is a multifaceted and

complex concept (Sidorchuk 2015, Climent and

Haftor 2021) as multiple elements affect value

perception, such as functionality, aesthetics,

symbolic, financial, social, and emotional aspects

(Karababa and Kjeldgaard, 2014). Value creation can

be defined as the trade-off between benefits captured

and sacrifices made/risks realized (see e.g. Helander

and Kukko,2009).

To ensure effective value creation, good

governance of data is essential. Data governance can

be defined as “the practice of managing data assets

throughout their lifecycle to ensure that they meet

organizational quality and integrity standards”

(Abraham et al. 2019). Data governance is a highly

cross-functional effort to increase the value of data, to

minimize data-related costs and risks and to be able

https://orcid.org/0000-0003-1614-2604

https://orcid.org/0000-0001-7762-1356

https://orcid.org/0000-0003-2201-6444

to utilize data as a strategic asset (Abraham et al.

2019, Carretero et al. 2017, Zhang et al. 2022).

Health data collected by public and private health

care organizations and governments is an extremely

valuable resource that could, in addition to its primary

use in health care, be used in the research aiming to

improve health outcomes, for improving the quality,

safety and cost-effectiveness for health care systems

and, also, for supporting the development of new

products and services. These types of uses are

typically referred to as secondary use of health data.

From the governance perspective secondary use

of health data is in many ways a special case: health

information consists of highly protected personal

health data, maintaining the privacy and security of

many types of health data can be difficult, there are

exceptional needs for data security, data sources are

heterogenous, interoperability between different

countries health care systems is a challenge and the

regulatory framework still remains fragmented (Pinto

et al. 2021, OECD 2015).

Nieminen, H., Sermontyte-Baniule, R. and Helander, N.

Stakeholder’s Perceptions of Value and Risks in Data Governance for the Secondary Use of Health Data.

DOI: 10.5220/0011373900003335

In Proceedings of the 14th International Joint Conference on Knowledge Discovery, Knowledge Engineering and Knowledge Management (IC3K 2022) - Volume 3: KMIS, pages 119-125

ISBN: 978-989-758-614-9; ISSN: 2184-3228

119

Different stakeholders (patients, medical

professionals, researchers, health care managers and

decisionmakers) have their own perspectives towards

the value creation. Value expectations of patients /

citizens for the secondary use of data have been

summarized in recent systematic reviews (Aitken et

al. 2016, Skovgaard et al. 2019, Perrin and Mathieu

2021, Kalkman et al. 2022). Patients have been found

to be in general supportive towards the secondary use

of health data, provided that the data is used for

“common good” purposes, and that they trust the

organizations (Aitken et al. 2016, Skovgaard et al.

2019, Perrin and Mathieu 2021, Kalkman et al. 2022).

Key concerns were related to confidentiality,

individual’s control over their data (Aitken et al.

2016, Perrin and Mathieu 2021, Kalkman et al. 2022)

and misuse of data in a way that puts some groups of

people in bad light (Skovgaard et al. 2019). Also,

citizens often lack knowledge on secondary use of

health data and on how the privacy and security of the

data is protected (Aitken et al. 2016, Perrin and

Mathieu 2021, Kalkman et al. 2022).

While there are recent literature reviews about the

banefits and risks expectation from the patient

perpective, reviews combining the perspectives of

stakeholders are abundant. The ways to create value

for the various stakeholders has recently gained

growing attention in the academic debate on value

creation in general (e.g. Busch et al. 2016), but not yet

much in the context of secondary use of health data.

This research study aims to assess, based on a

literature study, the value expectations and risks

perceived by the different stakeholders related to the

governance of health data for secondary use.

Understanding the value expectations and perceived

risks provides input for building governance

solutions, which meet the expectations of all

stakeholders as well as possible.

In the next section, the research method is

presented, and after this the findings of the literature

review are presented. Finally, the research results and

limitations of the study are discussed and the key

conclusions are summarized.

2 RESEARCH METHOD

To find the right articles related to the topic, the

following search terms were combined to search

articles published during the past 10 years from the

Web of Science database: health data, governance,

(secondary use OR re-use OR data sharing), (value

OR benefit), (risk OR problem), (stakeholder OR

patient OR citizen OR professional OR manager OR

industry OR decisionmaker OR physician).

Articles fulfilling all the following inclusion

criteria were included in the further analysis: 1)

Article utilizes or refers to health data governance for

the secondary use of data, 2) Perceived value,

benefits, risks or problems of secondary use are

studied from the perspective of at least one of the

identified stakeholder groups, 3) Article presents

original results from empirical research.

In addition, searches were done by scanning the

references of included papers. After the analysis, a

total of 23 papers were selected for further study. A

thematic synthesis approach (Thomas and Harden

2008) was adopted. First the key findings describing

the values, benefits, risks and problems perceived by

the different stakeholders were extracted from the

publications. After this, the findings were classified

under descriptive themes emerging from them, and in

the final phase the themes were interpreted in relation

to the research question and analytical themes were

developed.

3 FINDINGS

19 of the selected papers were studying the

patients/citizens, 10 medical researchers and 5

decisionmakers / managers (8 papers studied the

perceptions of several stakeholders).

Different types of mostly qualitative methods

were used in the studies. Most common methods were

structured interviews (4), focus groups (5), surveys

(8) and multi-method studies combining interviews

and focus groups (6). Total aggregated N for studies

using surveys was 15794, varying between 280 and

8004. For other methods the aggregated N was 655,

varying between 18 and 73 in the publications.

3.1 Value / Benefit Expectations

For patients, a total of five themes describing their

expectations for value/benefit from the secondary use

of data were identified: The most common value

expectation (9 papers) was that the data contributes

to public good through academic research (e.g.

Audrey et al. 2016, Grande et al. 2013, Karampela et

al. 2019). Related to this, the second most important

expectation was that data provides public benefit

improving the health of the population and health

equity (7) (e.g. Evans et al. 2020, Tully et al. 2018,

Spencer et al. 2016). Patients strongly except, that

public good for the society is achieved from the data

they share, and that the governance solutions help

KMIS 2022 - 14th International Conference on Knowledge Management and Information Systems

120

them to trust that this expectation is fulfilled.

Improvement of the quality of care or outcomes for

patients was also mentioned in 5 papers (e.g. Adanijo

et al. 2021, Velarde et al. 2021). Other value

expectations from patients included data advancing

innovation (4) (e.g. Colombo et al. 2010, Johansson

et al. 2021) and data improving the quality of

research (3) (e.g. Manhas et al. 2018). Patients often

were suspicious about the use of data for advancing

commercial innovation, but with more information

about the benefits and safeguards they became more

accepting towards it (Tully et al. 2018).

For researchers the public benefit of improving

the health of the population and health equity was the

most often mentioned value expectation (4/10

papers). Health data was seen as an essential public

resource to protect and produce population health

(Evans et al. 2020, Mbuthia et al. 2019) and a key tool

to help reach better health equity e.g. for low-to-

middle income settings (e.g. Jao et al. 2015). Other

benefits included data improving care and saving

resources (3 papers, e.g. Neves et al. 2019),

improvement of societal decision-making and

regulation (Hate et al. 2015) and improving the

quality of research (Adanijo et al. 2021). For

decisionmakers the most often mentioned value

expectations were improvement of care and saving of

resources (3/5, e.g. Mazor et al. 2017), data

improving the quality of research (2) and public good

benefits (2).

Table 1: Most common value/benefit expectations.

Patients (19 papers)

Public good through academic research

Public benefit improving the health of the

population and health equity

Improvement of the quality of care or outcomes

atients

Researchers (10 papers)

Public benefit of improving the health of the

population and health equity

Data improving care and saving resources

Decisionmakers (5 papers)

Improvement of care and saving of resources

Data improving the quality of research

Public good benefits

Some of the studied papers did not specifically

address the value expectations, but were more

focusing on risks, foreseen problems and

recommendations for data governance solutions.

3.2 Foreseen Risks and Problems

Several themes were identified for the foreseen risks

and problems in the governance of health data.

Patients most often mentioned privacy and

confidentiality related risks (10 papers). These

included especially risks of being able to identify a

person even from anonymized data (e.g. Cheah et al.

2018) and data and privacy breaches and

infringements (e.g. Seltzer et al. 2019). Mistrust in the

organizations governing data so that patients cannot

affect how and by whom the data is used was the

second most commonly mentioned risk (8 papers, e.g.

McCormick and Hopkins 2021, Shah et al.2019). Due

to lack of transparency and awareness of the ways

how the data will be used, data could be misused by

companies, government or other actors for “bad

intentions” (Evans et al. 2020). Third most common

theme (6 papers) was the risk of data leading to

stigmatizing or discriminating some groups in the

society, for example gays, ethnic groups or people

living in a certain area (e.g. . Audrey et al. 2016,

Cheah et al. 2018). Not achieving public good due to

the data used for profit-making purposes was seen as

a risk in 5 papers, e.g. Mazor et al. 2017. Also,

negative effect on care for example due to the long

lifespan of data “permanently marking” the

individual (Evans et al. 2020), patients not

understanding what they are consenting to and later

inconvenience for the patient were seen as risks.

Table 2: Most common foreseen risks and problems.

Patients (19 papers)

Privacy and confidentiality

Mistrust in organizations: patients cannot affect

how and b

whom the data is used

Data stigmatizing or discriminating some groups

in the societ

Not achieving public good due to the data used for

profit-making purposes

Researchers (10 papers)

Data stigmatizing or discriminating some groups

in the societ

Decisionmakers (5 papers)

Security and privacy problems

Lack of transparency and awareness in the way

how data is used

Problems in data quality

Data stigmatizing or discriminating some groups

For medical researchers the variation in the

foreseen risks was high. 5 papers mentioned the risk

of data leading to stigmatizing groups in society as a

risk (e.g. Jao et al. 2015). Other risks included

Stakeholder’s Perceptions of Value and Risks in Data Governance for the Secondary Use of Health Data

121

excessive costs for the governance (3, e.g. Ballantyne

et al. 2020), additional burden for the patient (4),

patients not understanding what they are consenting

to (3), privacy and confidentiality (3), mistrust in the

organization governing the data (3), lack of

transparency in the ways how data is used (2), data

affecting care in a negative way (3), prioritizing profit

(3) and problems in research quality (2).

Decisionmakers identified as risks and problems

security and privacy problems (4), lack of

transparency and awareness in the way how data is

used (4), problems in data quality affecting research

results (3) for example inherent biases in collecting

data misguiding decisions (Evans et al. 2020) and

data leading to stigmatizing groups in the society (3).

3.3 Recommendations for Data

Governance

Based on the study findings, many papers provided

recommendations and requirements for the data

governance. From patients the most common

recommendation was the need to provide clear and

understandable information about how the data is

shared and what the key benefits are (6 papers, e.g.

Audrey et al. 2016, Kim et al. 2015). Existing

safeguarding procedures need to be highlighted

(Adanijo et al. 2021) and a review process to oversee

the use of data needs to be at place (Johansson et al.

2021). All stakeholders, including patient

representatives, should be involved in the governance

of data (Adanijo et al. 2021, Hate et al. 2015) and

patients should have choice on what data is shared

and have a possibility to opt out (3 papers). Ensuring

trust in the organizations governing the data (4) and

safety and security (4) is essential. Sanctions should

be at place in case of data misuse (Colombo et al.

2019). In order to maintain trust good communication

is important (Hate et al. 2015).

Researchers agree with the patients that all

stakeholders should be involved in the governance of

data (4, e.g. Manhas et al. 2018). Community

engagement in the data governance committees is

seen as an essential element of ethical practice (e.g.

Jao et al. 2015). Ensuring patient consent is a key

requirement (3, e.g. Hate et al 2015, Stevenson 2015).

Effective processes are needed for the governance of

requests for data re-use in later projects, and a broad

form of consent would make this easier (Jao et al.

2015). Other recommendations include need to

provide clear and understandable information how

data is shared and what the benefits are and ensuring

security and safety through strict safeguards.

Decisionmakers provide very similar

recommendations as researchers, emphasizing the

involvement of all stakeholders in the governance,

ensuring clear and understandable information for all

stakeholders, ensuring safety and security, ensuring

patient consent and building trust in all entities

participating in the data governance process.

As a general observation, the reviewed papers did

not provide detailed level descriptions on the health

data governance models. Thus, there still remains in

the literature a gap of the discussion on successful

health data governance model in practice.

Table 3: Most common data governance recommendations.

Patients (19 papers)

Clear and understandable information about how

the data is shared and what the key benefits are

Ensuring trust in the organizations governing the

data

Ensuring safety and security

Patients should involved in the governance, and

hould have a choice on what data is shared

Researchers (10 papers)

All stakeholders should be involved in the

overnance of data

Ensuring patient consent

Decisionmakers (5 papers)

All stakeholders should be involved in the

overnance of data

Ensuring clear and understandable information

or all stakeholders,

4 DISCUSSION

Understanding of the stakeholder’s expectations for

the values and risks for the secondary use of health

data is important to ensure the development of high-

quality solutions for health data governance, which

can be accepted both by the citizens/patients and by

the medical professionals.

Recent literature reviews have indicated that for

the patients a key value expectation is that the

secondary use of health data should ensure public

benefits and “common good”, and that trust in the

organizations utilizing the data is essential for them

(Aitken et al. 2016, Skovgaard et al. 2019, Perrin and

Mathieu 2021, Kalkman et al. 2022). Our review

results indicate, that this key value expectation is also

shared by the other stakeholders. For the researchers

improvement of health equity was also seen as an

important value expectation. Big data is seen as a

valuable resource to improve and develop the society

towards being more equal. These types of altruistic

KMIS 2022 - 14th International Conference on Knowledge Management and Information Systems

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value goals are mentioned more often than values

related to care improvement or innovation, and

especially patients seem to be somewhat suspicious

towards industry’s use of data for innovation

purposes. Most probably being more transparent in

explaining the benefits of innovation, ways how data

would be used and the safeguards at place would

make the stakeholders more positive towards these

types of uses.

Summarising the results of value expectations of

patients, researchers and decisionmakers we have

identified that despite common value expectations

there exist unique value expectations, specifically for

patients and researchers. Analyzed papers report such

value expectation by patients as ability of data to

advance innovations. Interestingly, it is not so much

reported by researchers or decisionmakers which

perhaps are more involved into research and

innovation processes than patients. Other interesting

insight is the fact, that researchers report such value /

benefit expectation as improvement of societal

decision-making and regulation which is not reported

by decisionmakers themselves as value / benefit.

Contrary, decision makers see the benefit of

secondary data more as helping to improve the quality

of research. In other words, researchers and decision

makers do not assign certain value as applicable to

them even though it is closely related.

Regarding the perceived risks, for patients and

also for decisionmakers security and privacy related

risks were most often mentioned. This corresponds

well with the earlier reviews (Aitken et al. 2016,

Perrin and Mathieu 2021, Kalkman et al. 2022).

Researchers, however, did not see these risks as so

important. Possible reason for this is that

professionals know in more detail the ways how

privacy is protected. Interestingly, for all stakeholder

groups the risk of stigma for different groups in the

society was seen to be important. This would come

from the misuse of data or from the inherent biases

and limitations in the collected data.

Full transparency towards all stakeholders on the

ways what data is collected and used and on the

expected benefits would be essentially important for

building the trust. Specifically, literature analysis

highlights, that a worry of not achieving public good

due to the data used for profit-making commercial

purposes is expressed by patients, but not reported by

researchers or decisionmakers. Constant and clear

communication towards all stakeholders needs to be

a key element for the future data governance models.

When data is collected, it is required that patient

signs an informed consent. This consent typically is

only for needs of one study, and it describes in detail

what data is collected, how it is protected and what it

is used for. Broad forms of consent are also in use,

where patient gives the right for using data also for

secondary studies. While consent forms provide

information for the patients about the future use of

data, this “one governance contact with the patient”

principle is not enough. Advanced systems, where the

patient can monitor the requests for data use and opt

out or adapt her preferences are also being developed

(e.g. Williams et al. 2015).

Based on our review, stakeholders see the

importance of involving also the patient

representatives to the governance of health data. Data

sharing could be overseen by a committee involving

e.g. (Hate et al 2015) decisionmakers, internal

researchers, patient representatives, representatives

from the communities where data is collected and

ethicists. As Joa et al. (2015) states: “governance

processes need to include openness, solidarity,

fairness, and truth-telling”. Building this kind of

stakeholder involvement and continuous and

transparent communication process is a key challenge

for the future health data governance solutions and

thus, important avenue for further research.

The results of this literature study will be utilized

and further verified in our ongoing empirical study on

stakeholders perceptions on value, benefits and risks

of secondary use of health data. Study is focusing on

long-term home care of chronic diseases, and data is

being collected in 5 countries (Finland, Sweden,

France, Lithuania and Spain) as part of the DiHECO

(Digital Healthcare Ecosystem research and

innovation capability building) project.

Limitations of the Study

Even though this literature based research at hand was

able to give some guidelines for further research, the

research also faced limitations. For example, the

number of articles describing the perceptions of

researchers / medical professionals (10) and

decisionmakers (5) was smaller than the number of

articles analyzing the patients perspective (19),

leading to potential emphasis on patients’ views.

5 CONCLUSIONS

Based on our literature study, a key value expectation

for the secondary use of health for all stakeholders is

that data provides public benefits and “common

good”, especially through academic research.

Especially for the researchers improvement of health

equity in the society is also seen as an important value

expectation. For patients and also for decisionmakers

Stakeholder’s Perceptions of Value and Risks in Data Governance for the Secondary Use of Health Data

123

different security and privacy related risks were the

most often mentioned risks, while researchers did not

mention these risks so often. For all stakeholder

groups the risk of stigma for different groups in the

society and for the patient herself was seen to be

important.

Constant and clear communication towards all

stakeholders about what data is collected, how it is

used, what the expected benefits are and how the risks

are managed need to be a key element of health data

governance solutions. Communications is the

essential enabler for building the needed trust

between the stakeholders. All stakeholders see the

importance of involving also the patient

representatives to the governance of health data. Data

governance should be developed towards a

continuous and transparent collaborative process,

where all stakeholders voice is heard, and they can

affect the decisions. Building this kind of stakeholder

involvement and continuous and transparent

communication process is a key challenge for the

future health data governance solutions.

ACKNOWLEDGEMENTS

This work is a part of the DiHECO project, which has

received funding from the European Union’s Horizon

2020 research and innovation programme under grant

agreement No. 952012.

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