Deze privacy policy is op dit moment alleen in het Engels beschikbaar. Voor vragen over deze pagina, raden we u aan contact met ons op te nemen.
1. Introduction
The Health Telescope is a research panel that aims to gather insights on the ways in which eHealth is used, and how to find an app effective for a user. The applications are not intended as a replacement of professional care or other treatments. If you have any questions about your health, visit a doctor or medical specialist.
As part of the panel, users will be provided with a Xiaomi Mi Band 2, a wearable band that tracks your activity, heart rate and sleep. We do not ask panel members to download the official app that belongs with the wearable – in fact, we strongly advise against this, seeing as Xiaomi’s data policy does not fall under the European data legislature. The data generated by the band will be visible to users in the Health Telescope app, specially developed for this project.
This privacy policy describes the types of data that are processed in the Health Telescope, and the purposes for them. Additionally, this privacy policy gives more information on the user’s choices and the ways to contact the research team.
The Health Telescope was designed to put transparency first: we want users to be in charge of their data, and for this to happen, users need to first understand what happens to their data. Below, we will detail the types of data that we collect, as well as their purposes. All data transmissions happen in encrypted fashion, and the servers on which the data is stored are protected by the TU/e. We have worked together with TU/e to perform a Data Protection Impact Assessment, to uphold to the General Data Protection Regulation (GDPR).
This privacy policy may change if new developments in the panel gives cause to do so. This version was last edited on 4-6-2019.
2. When is this privacy policy applicable?
This privacy policy applies to all data collected in the Health Telescope app, stored on the Health Telescope servers, and obtained from the Health Telescope website.
3. Who is responsible for your data?
The Health Telescope is a research project set up by the Jheronimus Academy of Data Science (JADS), located at Sint Janssingel 92, 5211 DA ‘s-Hertogenbosch. The project was funded by CZ Zorgverzekeraars. JADS is a collaboration between TU Eindhoven and Tilburg University. These universities are responsible for processing the data as described in this privacy policy. For more information, go to https://www.tue.nl/en/storage/privacy/ and https://www.tilburguniversity.edu/privacy
4. Exchange of data
The data collected in the Health Telescope project can be valuable to other researchers. We aim to share data with researchers in an ethical way, by having a procedure in place where researchers send in requests for access to certain parts of the data, which can be approved by a predetermined committee consisting of partners of the Health Telescope project. After requests have been approved, users will individually be able to give access to their data. Only then will researchers be able to access any sensitive data. For more information on this, we refer to paragraph 6.
5. Which personal data do we collect and why?
The Health Telescope gathers several types of data to get an understanding of how panel members go through their lives, and the effect that eHealth applications have on this. An important part of the project is users’ control over their data. All of the below mentioned data types are collected because of their link to health and wellness, however we only want to collect data that users feel comfortable sharing. As such, every aspect of our data collection is optional, and users can decide to change their mind on which data is stored on our servers at any time.
All data will be anonymised before storage.
The data collected are:
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Daily steps
The wearable tracks how many steps are taken every minute, and stores this on the phone. This data is transmitted to the servers once per hour. Step count is an indication of how active a person is, and when observed both before and after the installation of an eHealth application, over a longer period of time, can give an indication of how your behavior changes after receiving the advice to be more active.
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Heart Rate
The wearable samples your heart rate once per hour. While research shows that heart rate measured by wearables is not guaranteed to be reliable – especially at a higher elevation – the measurement can be useful for two reasons: firstly the resting heart rate, which is an indication of cardivascular health. Secondly, the frequency of highly elevated heart rate gives a view on how active you are throughout your days.
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Sleep time
The wearable takes note of when you go to sleep, as well as when you wake up, to calculate the total time spent sleeping. Getting a healthy amount of sleep is closely connected with both physical activity and well-being. For adults between 18 and 64 years old, the American National Sleep Foundation recommends between 7 and 9 hours of sleep daily. For people ages 65 and up, the recommendation is 7 to 8 hours of sleep.
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App usage
The Health Telescope application records the start time, end time, and name of all active applications on your mobile phone. We do not see in any way what happens within your apps. This means we can not at any point see your e-mails, messages, social media behavior, or personal details filled in in any apps. The reason we want to have access to this data is that it shows how much time is spent on a phone. Research indicates a correlation between cell phone usage and well-being. Aside from this, it can show us how often the applications that we recommend you to download are opened and used. This can be used to see if the advice was suited for you, or if a different advice should be given.
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Location
The Health Telescope application records GPS coordinates once per four hours. Note that before these are stored, they are transposed to ensure anonymity. This way researchers can use them to look into the distance travelled, without risking the information being traced to an individual.
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Questionnaire
At the start of the panel, users are asked to complete a questionnaire. This questionnaire asks general questions on health and activity, as well as three psychological construct tests: Need for Cognition, Big Five and Susceptibility to Persuasion. These constructs are asked as a way to find out which type of application is likely to help you in accomplishing a goal.
Additionally, the Health Telescope application will periodically send out very brief surveys, usually consisting of up to five multiple choice questions that can be answered in less than five minutes. This is used as a way to check up on how you are doing.
We would like to again emphasize that every part of this data collection is voluntary; if you do not feel comfortable sharing any of the above mentioned data with us, it is in your right not to do so, and not giving access to every data source will not mean being removed from the panel.
How long will we save your data?
Firstly: we will only store data with your permission. If you, at any point, want to not share further data, or want us to remove any earlier recorded data, this is in your right. For more information on this, look at paragraph 8.
To allow for enough time for research to take place, as well as comply with rules for scientific integrity, we would like to store an anonymized version of your data for up to ten years after the panel concludes.
6. Giving access of data to third parties
It is often hard for researchers to get their hands on a good dataset. The data collected in the Health Telescope is a unique opportunity for researchers in eHealth to access a large, thoughtfully structured dataset, and we would find it unethical to use the data simply for one project, only to discard it. As such, we want to find a way to allow other research to benefit from our data collection, while keeping transparency, participant control and ethical science our top priorities.
To do this, we have set up an External Review Board, consisting of members from several organisations involved in the Health Telescope project. If any researcher would like to access (a part of) our dataset, they are able to send their request in the form of a research proposal, specifying the types of data they want access to, the reason they need this data, and the duration they need this data for. The external review board will go over these requests and assess the benefits and risks of sharing the data.
If the board approves the research proposal, the next step is in the hands of the participants: we only want to share your data if you feel comfortable doing so. A message will be sent out on the Health Telescope app, briefly describing the research proposal, data used, and purpose, with which you – the participant – will be able to decide if you would like to share your data.
Using this process, we aim to ethically share data in an anonymized fashion. For more information, check https://www.tilburguniversity.edu/privacy
Aside from this, we are situated in the Netherlands, and as such will need to follow Dutch laws. this means that personal data can and will only be shared with parties like the fiscal authorities, police or legal corporations, if it is required by Dutch law.
7. Security
In the Health Telescope project, data security has been made a priority from the start. We aim to protect participants from data leaks, loss of data, and unlawful processing of data.
We handle your data with care. The Health Telescope team has made sure that every step of the data collection, transmission and storage process is secured. We are aware that the data we are collecting is sensitive, and have designed the project to handle the data as anonymously as we can, to ensure the data can not get traced back to individuals.
The measures taken include training the team to handle sensitive data, using servers that are encrypted and protected by TU Eindhoven’s security policies, encrypted transmission of data, and transposing data as it is collected to ensure anonymity.
8. Data collection, requesting access to, correction of, and deletion of your personal data
You can change the data types collected in the Health Telescope app at any time by navigating to the Settings tab, and pressing the Data Sources button. From here, you can choose which data is recorded and transmitted to the server.
If you wish to get a copy of your data, correct any of the collected data, or delete all of your collected data, you can do so by contacting us, either through the FAQ/Contact tab in the Health Telescope app, or by sending an e-mail to info@health-telescope.com. We will fulfill your request within four weeks.
For any additional questions on privacy and the way your data is handled, you can contact us by sending an e-mail to info@health-telescope.com.