Original Paper

Influence of Disease-Related Stigma on Patients’Decisions to

Upload Medical Reports to the German Electronic Health Record:

Randomized Controlled Trial

Niklas von Kalckreuth, MSc; Markus A Feufel, MSc, PhD

Division of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany

Corresponding Author:

Niklas von Kalckreuth, MSc

Division of Ergonomics

Email: [email protected]

Abstract

Background: The rollout of the electronic health record (EHR) represents a central component of the digital transformation of

the German health care system. Although the EHR promises more effective, safer, and faster treatment of patients from a systems

perspective, the successful implementation of the EHR largely depends on the patient. In a recent survey, 3 out of 4 Germans

stated that they intend to use the EHR, whereas other studies show that the intention to use a technology is not a reliable and

sufficient predictor of actual use.

Objective: Controlling for patients’intention to use the EHR, we investigated whether disease-specific risk perceptions related

to the time course of the disease and disease-related stigma explain the additional variance in patients’decisions to upload medical

reports to the EHR.

with social stigma may deter people from uploading related medical reports to the EHR. To ensure the reliable use of this key

technology in a digitalized health care system, transparent and easy-to-comprehend information about the safety standards of the

EHR are warranted across the board, even for populations that are generally in favor of using the EHR.

(JMIR Hum Factors 2024;11:e52625) doi: 10.2196/52625

KEYWORDS

electronic health record; EHR; technology acceptance; upload behavior; health-related stigma; intention to use; intention-behavior

gap; medical reports; stigma; Germany; patient decision; digital transformation; implementation; risk; decision; risk perception;

social stigma; safety

Background

EHR, patients’medical data (eg, findings, diagnoses, therapies,

vaccinations, discharge reports, emergency data, and medication

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plans [4,5]) can be digitally documented, exchanged, and viewed

[4,6]. Better coordination of health data can ultimately save

costs in the health care system [7-9].

data. As described below based on the available literature,

intention to use is not a sufficient and reliable predictor of EHR

use. Therefore, in this study, we sought to investigate to what

extent intention to use predicts actual use and what additional

factors may need to be taken into account to more reliably

predict EHR use.

Related Work

The technology acceptance model (TAM) and its extensions

such as the unified theory of acceptance and use of technology

(UTAUT) assume a positive relationship between intention to

for by the two constructs [15-17]. Questionnaire studies on this

so-called “intention-behavior gap” suggest that intention is not

a reliable predictor of behavior and consequently that other

influencing factors must exist [18,19]. For instance, in the

context of social media and electronic commerce, users often

have massive privacy concerns to disclose their data and their

intentions to use are generally low. Nonetheless, users tend to

disclose their data if the benefits they expect from using the

applications are sufficiently high [20]; this phenomenon is called

the “privacy paradox” and has been confirmed repeatedly

what extent intention to use predicts the actual use of digital

health technologies such as the EHR. Theories of technology

acceptance infer a direct, positive influence, whereas the results

of various questionnaire studies suggest that other factors must

play a role given the intention-behavior gap. Although the

of data) on the intention to use an EHR have been investigated,

a thorough investigation of disease-related factors has not yet

been performed.

Methodologically, usage behavior has mostly been investigated

intention and behavior [30]. Since the models of technology

acceptance described above (ie, TAM and UTAUT) have been

evaluated using questionnaires, they may not provide reliable

insights into usage behavior in the context of the EHR.

as chronic diseases (“patients with multimorbidity” use case),

in terms of risks and benefits of uploading to the EHR; and (2)

users who are healthy or have little to no preexisting conditions

before they develop a chronic or acute disease (“patients with

first contact” use case). To investigate these use cases, we

developed and used an interactive prototype of the EHR (ie, a

click dummy) to investigate factors influencing the EHR users’

decision to upload medical reports. Compared to questionnaire

the click dummy is closer to a real interaction with the EHR,

[30]. To investigate the first use case, we used a mixed methods

design where the experimental intervention was based on an

acute condition. In contrast, respondents were less likely to

upload a report of a disease with high stigma. When a disease

with high stigma had a chronic time course, reports were still

uploaded. We here report the results of the second use case in

which participants interacted with one medical report only.

Ethical Considerations

This study was approved by the Ethics Committee of the

Department of Psychology and Ergonomics (Institut für

Psychologie und Arbeitswissenschaft) at Technische Universität

about the duration of the survey (approximately 8 minutes) as

well as the compensation for participation. Participants were

compensated with €1.60 (US $1.75) for their time and thus

according to minimum wage. The participants also had the

possibility to download a PDF of the participant information

on the first page.

Participants’ personal data and responses were kept entirely

anonymous and password-protected in the department’s data

vault. An anonymized data set from the study was made

available to other researchers for further analysis with open

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collected during the study were managed using the TU

repository “DepositOnce,” adhering to the regulations for

ensuring good scientific practice at TU Berlin, the guidelines

of the “DepositOnce” internal research data repository, and data

protection regulations. Compliance with these repository

professional, or social life of the affected person. For this

purpose, the medical reports related to personal lifestyle, as

reflected in tests for sexually transmitted diseases [31,32]. The

time course is a classification of diseases in terms of their

duration. These can be either acute (diseases of short duration

von Kalckreuth & FeufelJMIR HUMAN FACTORS

3a). Participants then decided whether they wanted to upload

the report to their EHR (step 3b). Afterward, participants were

asked to rate the perceived privacy risks and benefits of

uploading the report (step 3c). The survey was completed with

the collection of demographic characteristics (age, gender,

4), the participants also had the opportunity to declare their

responses invalid, while still receiving compensation, in case

they did not pay sufficient attention to the instructions provided

(eg, due to choosing random answers, inattentively reading

questions, or rushing through the survey).

they were marked as invalid by participants. Figure 2 shows

the flow of participants in the study based on the CONSORT

(Consolidated Standards of Reporting Trials) statement [42].

Thus, a sample of 241 observations (146 male, 92 female, 1

diverse, 2 no information provided) was used for further

analysis. Table 2 summarizes the demographic characteristics

of the sample.

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Mann-Whitney Utests showed a significant effect of stigma

potential on privacy risk perception (W=10,777; P<.001), where

high stigma was associated with high risk. The effect of the

disease time course on benefit perception was not significant

(W=6379; P=.14), with a mean benefit perception of 5.34 (SD

1.39) for acute diseases and of 5.54 (SD 1.43) for chronic

diseases. Consequently, in contrast to our study on the first use

case with several medical reports [31], there was no relationship

found between time course and perceived benefits when there

is only one report to upload.

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R2=0.590, Cox-Snell R2=0.537; χ215=86.973; P<.001) to control

for the covariate intention to use and the demographic variables

age, sex, education level, and experience with the EHR. The

covariate intention to use (odds ratio [OR] 2.497, 95% CI

1.831-3.456; z=5.455; P<.001) showed an association with the

decision to upload, whereas none of the control variables had

an effect. These variables were consequently removed from the

model for further analyses.

Uploading Behavior

To examine the association between the decision to upload and

as likely that the report was uploaded to the EHR. In addition,

to upload; specifically, when stigma was high, it was six times

less likely that the report was uploaded than when stigma was

low. Time course of the disease was not associated with the

decision to upload a report. The summary of the results of the

logistic regression are shown in Table 3.

Odds ratio (95% CI )PvaluezvalueVariable

2.682 (1.971-3.639)<.0016.210Intention to use

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Principal Findings

Our results show that the decision to upload an individual

medical report is influenced by people’s intention to use the

EHR. However, the stigma potential of the diseases mentioned

in the reports also influenced this decision. Specifically,

uploading diseases with high stigma was associated with higher

privacy risk than diseases with low stigma (see Figure 3A).

Consequently, stigma potential had a negative influence on the

decision to upload records (see Figure 4A), despite generally

high intentions to use the EHR.

to use (scores<4) did not emerge in the case of rejection of

uploading. Rather, it is notable that the rejected findings are

dots/triangles in Figure 4C). This shows that the effect strength

than that of the intention to use (OR 2.628). The fact that

intention to use supports the assumptions of an

intention-behavior gap in EHR use [18].

on the decision to upload. In contrast, the time course only

played a role in use case 1, where people interact with multiple

reports at a time [31], but not when they interact with only one

medical report (use case 2). This difference may be explained

by the fact that patients’ “health concerns” have a positive

When faced with multiple medical reports, patients may be

more aware and concerned about interactions between chronic

diseases, because they more strongly affect the patient’s health

both now and in the future; consequently, the willingness to

report to the EHR. Thus, in addition to increasing people’s

general intention to use the EHR via marketing and information,

transparent and easy-to-comprehend information about the safety

standards of the EHR (eg, for encrypting data) and the protection

of medical records (eg, the control of access rights) are

warranted, even for populations that are already in favor of

using the EHR. Such combined interventions may help to reduce

security concerns and enable realistic risk assessments of a data

leak to ultimately ensure reliable use of the EHR as a key

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disease is not immediately apparent [32,43]. The question arises

to what extent the behavior of stigmatized individuals can be

simulated under experimental conditions, provided that

participants do not exhibit stigmatized characteristics. To further

strengthen the validity and generalizability of our results, a

used in the stimuli are not readily comparable. We decided to

use the diseases listed in Table 1 as stimuli because they

achieved the expected effects in the preliminary study [31]. We

could only partially replicate these findings in the present study.

For future studies, it would make sense to use diseases that can

be more readily compared in terms of their stigma potential and

time course (eg, gonorrhea and HIV or a wrist fracture and

arthritis) to further strengthen the generalizability of the present

findings.

Another limitation is that the distribution of our sample in terms

of gender, age, and level of education does not correspond to

that of the average German population. In particular, the level

of education of our sample was above average. Although we

were unable to detect any effects of the control variables age,

gender, and level of education in the analysis, the results of this

study should be validated with a more representative sample in

the future.

In our study, we investigated which disease-specific factors

influence whether medical reports are uploaded to the EHR in

a German setting. To answer this question, we varied the stigma

may depend on disease-specific factors. Consequently, to ensure

successful implementation of the EHR, stakeholders in the

health system should not only promote the EHR per se but

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