Information Fatigue SyndromeNCT05631210
Using Pictograms to Make Privacy Agreements More Accessible
A study testing Privacy agreements with pictograms in people with Information Fatigue Syndrome, run by University of Waterloo at 1 site in Canada.
Trial summary
Background: Privacy agreements can foster trust between users and data collecting entities by reducing the fear of data sharing. Users typically identify concerns with their data privacy settings, especially when it comes to health data, but due to the complexity and length of privacy agreements, users opt to quickly… Read more about this study
- Who is it for?
- Any ageHealthy volunteers can take part
- Conditions the study is for
- Information Fatigue Syndrome
- What is being tested?
- Privacy agreements with pictograms
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 57 participants
- Where
- 1 siteCanada
- Study dates
- 6 Sep 2019to 6 Sep 2019
- Phase
- Interventional
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Who may be able to join
- people that understand technology enough to understand data collection and data privacy.
Who cannot join
- people that are not tech savvy enough to use things that require privacy agreements
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Exploring the Use of Pictograms in Privacy Agreements to Facilitate Communication Between Users and Data Collecting Entities: Randomized Controlled Trial
Background: Privacy agreements can foster trust between users and data collecting entities by reducing the fear of data sharing. Users typically identify concerns with their data privacy settings, especially when it comes to health data, but due to the complexity and length of privacy agreements, users opt to quickly consent and agree to the terms without fully understanding them.
Objective: This study explores the use of pictograms as potential elements to assist in improving the transparency and explanation of privacy agreements.
Methods: During the development of the pictograms, the Double Diamond design process was applied for 3 instances of user interactions and 3 iterations of pictograms. The testing was done by performing a comparative study between a control group, which received a fictional privacy agreement about a health tracking wearable with no pictograms, and an experimental group, which received pictograms. The pictograms were individually tested to assess their efficacy by using an estimated comprehension of information symbols test.
Read the detailed description
Privacy agreements fulfill the important role of helping users understand how their data will be used by data collecting entities. The role of privacy agreements is to not only provide users with the chance to decide whether they want to disclose their data to an entity but also foster trust and reduce users' concerns about data sharing.
Many users are concerned about personal data collection, and privacy agreements may alleviate these concerns. However, due to the complexity of privacy agreements, there are barriers to understanding data use, which result in users agreeing to terms that they do not fully comprehend. The investigators explore the use of pictograms as a potential way to improve the transparency of privacy agreements and users' understanding of privacy agreements.
An evaluation was conducted to test whether the addition of the pictograms made reading privacy agreements more efficient and less frustrating for users. For this purpose, a questionnaire was developed along with 2 versions of a privacy agreement. The control group (31 participants) received the traditional version of the privacy agreement while the experimental group received the version of the privacy agreement that included the pictograms created by us (29 participants). The privacy agreement was an imaginary privacy agreement about the Fit-bit and the talked about the collection of health data through the wearable. Participants were recruited by using Amazon Mechanical Turk.
The survey was closed and distributed through Amazon Mechanical Turk-a website that allows people to fill out surveys for a small monetary gain. The administration of the survey was performed via Amazon Mechanical Turk, and security for the survey and the assurance that there were no duplicate responses were provided by the website. All questions were multiple-choice questions, and if there was a question that was not properly filled, the data for that whole entry were discarded.
The target population was people who had some understanding of technology, and the sample was a convenience sample.
The survey was cleared by the University of Waterloo ethics board (application number: 4060 Privacy Agreement for Sharing Health Data). The survey was voluntary, and participants could stop participating at any moment. At the start of the questionnaire, the participants were told about the purpose of the study, its length, the possible risks, and the benefits of taking the survey. They were then asked for informed consent. The only personalized information collected was employment status, sex, age, ethnicity, and the places where participants lived.
Both groups were quizzed on the content of their version of the privacy agreement and were later asked to rate their perceived level of frustration when looking for the answers. Participants were then asked for suggestions about changes to the privacy agreement and the pictograms.
The 4-part questionnaire was developed by using Qualtrics (Qualtrics International Inc)-a web-based tool-and beta tested via a pilot study to assess its feasibility. The first part asked demographic questions about participants' age, sex, ethnicity, occupation, education, country of residence, and region. The investigators used the second part to compare the performance of the control group to that of the experimental group for part 3. In the second part, the control group was given the traditional version of the privacy agreement, whereas the experimental group was given the version of the privacy agreement with a group of pictograms that summarized its content, which appeared before the written section.
Participants were then asked to answer 5 questions that quizzed them on the content of the privacy agreement that they had received. For both groups, all questions were about the information represented by the pictograms.
The questions were as follows:
- Question 1: "Is your information being collected?"
- Question 2: "Can you opt out of some services?"
- Question 3: "Will your data be identifiable when shared?"
- Question 4: "Is your location being collected?"
- Question 5: "Can third parties have access to your data?" Each participant's response was timed to assess how quickly participants could find the correct answers based on the information presented in their version of the privacy agreement. Time data were compared between the control group and the intervention group.
The third part of the questionnaire asked participants to rate their frustration levels while answering part 2, their level of concern, and their previous knowledge about data privacy. In total, there were 9 pages in the survey, which included the option to return to the previous pages before the end of the survey.
- Conditions
- Information Fatigue Syndrome
- Being tested
- Privacy agreements with pictograms
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Privacy agreements with pictogramsOther
The intervention consisted of a modified privacy agreement talking about health data. Instead of presenting all of that information through text, the investigators added pictograms that summarized the key points at the beginning.
| Study group | Role | What they receive |
|---|---|---|
| Normal privacy agreement | No intervention | This group was the control. They were given a normal privacy agreement to read and interpret. |
| Pictogram privacy agreement | Experimental | This group was given the same privacy agreement of the control group, but with the addition of pictograms that summarized the information. Receives: Other: Privacy agreements with pictograms |
What is being measured
The primary outcome is the main question the study is designed to answer.
Increasing the level of understanding about health data
This outcome was based on the premise that through the use of pictograms people would understand privacy agreements better and take less time to find the answers. The investigators measured it using a questionnaire and measured if people could correctly guess what were their rights. For example, the questionnaire would ask the participant "is your data being collected?" and then the participant would choose "yes", "no", "I don't know", and "I don't want to read all of that". With this the investigators were able to measure if they were actually understanding their right regarding their health data, which were presented in the privacy agreement. Each correct answer gets 1 point and the privacy agreement with the most points at the end had the template that made it easier for the participants to understand their rights. The higher the score, the better the outcome.
Measured: Day 1
Decreasing frustration while reading privacy agreements
This outcome was based on the premise that through the use of pictograms people would experience less frustration when trying to find specific information and understand their rights in a privacy agreement. The investigators measured this using a self-reporting questionnaire where the participants would report what was their level of perceived frustration after reading the privacy agreement. This was measured using a Likert Scale of 5 points where 1 was very frustrated and 5 was neutral. The lower the score, the more frustrated participants reported being.
Measured: Day 1
Secondary outcomes (1)
Overall understanding of the meanings of the pictograms as measured by the Estimated Comprehension of Information Symbols
This outcome sought to see how effective the privacy agreements were in conveying information. For this the investigators used Estimated Comprehension of Information Symbols. The test comprised of showing a pictogram and a description of what it was meant to represent to a participant, and then asking them to guess what percentage of the population they thought would understand the meaning. If the average is less than 47% than the pictogram is not understandable. If it's above 87% then it can be considered a success. In between 47% and 87% the test needs to be repeated with a regular comprehension test. Therefore, a higher score means a better outcome.
Measured: Day 1
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted30 Nov 2022
- Study start6 Sep 2019
- Primary completion6 Sep 2019
- Study completion6 Sep 2019
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Information Fatigue SyndromeStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Other
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Model description
- Two groups were randomly created. Both groups were given an imaginary privacy agreement about a wearable that would collect health data from the participant. Group 1 was given that privacy agreement with only words and group 2 was given the privacy agreement with the addition of pictograms at the top. Those pictograms were meant to summarize the content of the privacy agreement and highlight the most important parts.
- Masking
- None (open label)
- Enrolment
- 57 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Waterloo
- Sponsor type
- University, hospital or other
- Collaborators
- CSA Group
- Responsible party
- Sponsor
- Investigators
- Plinio Morita, PhD, Study chair, University of Waterloo
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05631210
- Sponsor's protocol ID
- ORE#40606
- Status last verified
- Nov 2022
- First submitted
- 7 Oct 2022
- Last updated
- 30 Nov 2022
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Ugaya Mazza L, Fadrique LX, Kuang A, Donovska T, Vaillancourt H, Teague J, Hailey VA, Michell S, Morita PP. Exploring the Use of Pictograms in Privacy Agreements to Facilitate Communication Between Users and Data Collecting Entities: Randomized Controlled Trial. JMIR Hum Factors. 2023 Jan 25;10:e34855. doi: 10.2196/34855.
PubMed 36696167
Study at a glance
From the registry record, last updated by the sponsor on 30 Nov 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Exploring the Use of Pictograms in Privacy Agreements to Facilitate Communication Between Users and Data Collecting Entities: Randomized Controlled Trial
- ClinicalTrials.gov ID
- NCT05631210
- Acronym / sponsor ID
- ORE#40606
- Conditions
- Information Fatigue Syndrome
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 57 participants (actual)
- Lead sponsor
- University of WaterlooUniversity, hospital or other
- Collaborators
- CSA Group
- Study start
- 6 Sep 2019 (actual)
- Primary completion
- 6 Sep 2019 (actual)
- Study completion
- 6 Sep 2019 (actual)
- First posted
- 30 Nov 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Background: Privacy agreements can foster trust between users and data collecting entities by reducing the fear of data sharing. Users typically identify concerns with their data privacy settings, especially when it comes to health data, but due to the complexity and length of privacy agreements, users opt to quickly consent and agree to the terms without fully understanding them.
Objective: This study explores the use of pictograms as potential elements to assist in improving the transparency and explanation of privacy agreements.
Methods: During the development of the pictograms, the Double Diamond design process was applied for 3 instances of user interactions and 3 iterations of pictograms. The testing was done by performing a comparative study between a control group, which received a fictional privacy agreement about a health tracking wearable with no pictograms, and an experimental group, which received pictograms. The pictograms were individually tested to assess their efficacy by using an estimated comprehension of information symbols test.
Detailed description
Privacy agreements fulfill the important role of helping users understand how their data will be used by data collecting entities. The role of privacy agreements is to not only provide users with the chance to decide whether they want to disclose their data to an entity but also foster trust and reduce users' concerns about data sharing.
Many users are concerned about personal data collection, and privacy agreements may alleviate these concerns. However, due to the complexity of privacy agreements, there are barriers to understanding data use, which result in users agreeing to terms that they do not fully comprehend. The investigators explore the use of pictograms as a potential way to improve the transparency of privacy agreements and users' understanding of privacy agreements.
An evaluation was conducted to test whether the addition of the pictograms made reading privacy agreements more efficient and less frustrating for users. For this purpose, a questionnaire was developed along with 2 versions of a privacy agreement. The control group (31 participants) received the traditional version of the privacy agreement while the experimental group received the version of the privacy agreement that included the pictograms created by us (29 participants). The privacy agreement was an imaginary privacy agreement about the Fit-bit and the talked about the collection of health data through the wearable. Participants were recruited by using Amazon Mechanical Turk.
The survey was closed and distributed through Amazon Mechanical Turk-a website that allows people to fill out surveys for a small monetary gain. The administration of the survey was performed via Amazon Mechanical Turk, and security for the survey and the assurance that there were no duplicate responses were provided by the website. All questions were multiple-choice questions, and if there was a question that was not properly filled, the data for that whole entry were discarded.
The target population was people who had some understanding of technology, and the sample was a convenience sample.
The survey was cleared by the University of Waterloo ethics board (application number: 4060 Privacy Agreement for Sharing Health Data). The survey was voluntary, and participants could stop participating at any moment. At the start of the questionnaire, the participants were told about the purpose of the study, its length, the possible risks, and the benefits of taking the survey. They were then asked for informed consent. The only personalized information collected was employment status, sex, age, ethnicity, and the places where participants lived.
Both groups were quizzed on the content of their version of the privacy agreement and were later asked to rate their perceived level of frustration when looking for the answers. Participants were then asked for suggestions about changes to the privacy agreement and the pictograms.
The 4-part questionnaire was developed by using Qualtrics (Qualtrics International Inc)-a web-based tool-and beta tested via a pilot study to assess its feasibility. The first part asked demographic questions about participants' age, sex, ethnicity, occupation, education, country of residence, and region. The investigators used the second part to compare the performance of the control group to that of the experimental group for part 3. In the second part, the control group was given the traditional version of the privacy agreement, whereas the experimental group was given the version of the privacy agreement with a group of pictograms that summarized its content, which appeared before the written section.
Participants were then asked to answer 5 questions that quizzed them on the content of the privacy agreement that they had received. For both groups, all questions were about the information represented by the pictograms.
The questions were as follows:
- Question 1: "Is your information being collected?"
- Question 2: "Can you opt out of some services?"
- Question 3: "Will your data be identifiable when shared?"
- Question 4: "Is your location being collected?"
- Question 5: "Can third parties have access to your data?" Each participant's response was timed to assess how quickly participants could find the correct answers based on the information presented in their version of the privacy agreement. Time data were compared between the control group and the intervention group.
The third part of the questionnaire asked participants to rate their frustration levels while answering part 2, their level of concern, and their previous knowledge about data privacy. In total, there were 9 pages in the survey, which included the option to return to the previous pages before the end of the survey.
Study design
- Primary purpose
- Other
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Number of arms
- 2
- Model description
- Two groups were randomly created. Both groups were given an imaginary privacy agreement about a wearable that would collect health data from the participant. Group 1 was given that privacy agreement with only words and group 2 was given the privacy agreement with the addition of pictograms at the top. Those pictograms were meant to summarize the content of the privacy agreement and highlight the most important parts.
| Arm | Type | Receives |
|---|---|---|
| Normal privacy agreement | No intervention | –This group was the control. They were given a normal privacy agreement to read and interpret. |
| Pictogram privacy agreement | Experimental | Other: Privacy agreements with pictogramsThis group was given the same privacy agreement of the control group, but with the addition of pictograms that summarized the information. |
Who may qualify
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (1 listed)
- people that understand technology enough to understand data collection and data privacy.
Key exclusion criteria (1 listed)
- people that are not tech savvy enough to use things that require privacy agreements
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Privacy agreements with pictogramsThe intervention consisted of a modified privacy agreement talking about health data. Instead of presenting all of that information through text, the investigators added pictograms that summarized the key points at the beginning. | Other | Pictogram privacy agreement |
Primary outcome
Increasing the level of understanding about health data
Time frame: Day 1
This outcome was based on the premise that through the use of pictograms people would understand privacy agreements better and take less time to find the answers. The investigators measured it using a questionnaire and measured if people could correctly guess what were their rights. For example, the questionnaire would ask the participant "is your data being collected?" and then the participant would choose "yes", "no", "I don't know", and "I don't want to read all of that". With this the investigators were able to measure if they were actually understanding their right regarding their health data, which were presented in the privacy agreement. Each correct answer gets 1 point and the privacy agreement with the most points at the end had the template that made it easier for the participants to understand their rights. The higher the score, the better the outcome.
Decreasing frustration while reading privacy agreements
Time frame: Day 1
This outcome was based on the premise that through the use of pictograms people would experience less frustration when trying to find specific information and understand their rights in a privacy agreement. The investigators measured this using a self-reporting questionnaire where the participants would report what was their level of perceived frustration after reading the privacy agreement. This was measured using a Likert Scale of 5 points where 1 was very frustrated and 5 was neutral. The lower the score, the more frustrated participants reported being.
1 secondary outcome
Overall understanding of the meanings of the pictograms as measured by the Estimated Comprehension of Information Symbols
Time frame: Day 1
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 30 Nov 2022.
- Background: PubMed 36696167Ugaya Mazza L, Fadrique LX, Kuang A, Donovska T, Vaillancourt H, Teague J, Hailey VA, Michell S, Morita PP. Exploring the Use of Pictograms in Privacy Agreements to Facilitate Communication Between Users and Data Collecting Entities: Randomized Controlled Trial. JMIR Hum Factors. 2023 Jan 25;10:e34855. doi: 10.2196/34855.
- Individual participant dataSharing planned: No
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Plinio Morita, PhD study chair
University of Waterloo
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Privacy agreements with pictograms in people with Information Fatigue Syndrome, run by University of Waterloo at 1 site in Canada.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 30 Nov 2022. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Increasing the level of understanding about health data (time frame: Day 1). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT05631210, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 30 Nov 2022.