Asthma UK Centre for Applied Research
Asthma UK Centre for Applied Research
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Privacy Statement

How the AAMOS-00 study uses your information

What will happen if I don’t want to carry on with the study?

If, at any time after agreeing to take part, you change your mind about being involved in this study you are free to withdraw without giving a reason. We’ll ask if we may keep the data collected up to that point to be used in our analysis. You will also have the choice to have all your study data deleted and not used for subsequent research.

Will my taking part in this study be kept confidential?

We take the confidential storage of data very seriously and will follow the procedures of the University of Edinburgh (see additional GDPR information). All data collected from your daily diary (see “what will happen to my data” below) will be coded with a study number so that it’s made anonymous and can only be linked to your personal information by members of the research team. Information about you will be stored electronically on a secure server and only people with usernames and passwords can access it.

Inspections and audits make sure we are carrying out the study to comply with the UK regulations. If our study is inspected representatives of the University sponsor (ACCORD), research ethics committee (REC), and independent inspectors may have access to personal information. They are bound by the same confidentiality rules as the research team.

Published results will not contain any personal data.

What will happen to my data?

Eligibility and Consent (Phase 1 and 2)

The eligibility questionnaire and consent forms will be answered using Jisc Online Surveys, a service provided by Jisc. Jisc acts as the Data Processor, processing the data according to the instruction of the research team. Jisc is hosting the systems in Amazon Web Services (AWS), in the Ireland availability zone.

Respondents on Online Surveys remain anonymous. Online Surveys does not use cookies for survey completion and external tracking software such as Google Analytics is not supported on Online Surveys. Additionally, the research team cannot access any information about respondents’ IP addresses.

You can read more about Jisc at www.jisc.ac.uk and how Online Surveys handles the data at https://www.onlinesurveys.ac.uk/gdpr/.

The eligibility questionnaire does not ask for any personal information, the answers will only be used to inform your eligibility to join the study and you are not bound in any way to join the study. The answers to the eligibility questionnaire will be deleted after the end of the study.

The consent forms will ask for the following personal information:

  • Your name
  • Contact email address

The consent forms will be accessed by the research team. The answers to the consent forms will be kept until the end of the study.

Phase 1

The University of Edinburgh is the data controller for this study. You can read the University of Edinburgh's data policy at: https://www.ed.ac.uk/information-services/about/policies-and-regulations/research-data-policy.

Data gathered with Mobistudy will be stored at Malmö University, then copied to the University of Edinburgh.Mobistudy is a GDPR compliant organisation and they must follow our rules about keeping your information safe. To safeguard rights, Mobistudy will only collect the minimum of information that identifies you (your name and email address) and this personal data will be detached from the questionnaire data and stored separately. The data will remain encrypted at storage and in transfer. Your data will remain on Mobistudy for as long as you keep your Mobistudy profile. You can read Mobistudy’s privacy policy at https://mobistudy.org/appPrivacyPolicy.html. Only the research team will have access to personal data, which will be securely destroyed three years after the end of the study.

The date, time, and IP address of your login and when you send data in Mobistudy will be logged for security reasons and kept for 5 years. The study team can’t access this data.

Here’s the data we’ll be collecting in phase 1:

  • Height, weight, ethnic group, smoking history, about your asthma at the start of phase 1 using Mobistudy
  • Daily asthma questionnaire using Mobistudy
  • Weekly asthma questionnaire using Mobistudy

Phase 2

The University of Edinburgh is the data controller for this study. You can read the University of Edinburgh's data policy at: https://www.ed.ac.uk/information-services/about/policies-and-regulations/research-data-policy.

Data gathered with Mobistudy will be stored at Malmö University, then copied to the University of Edinburgh. Mobistudy is GDPR compliant organisation and they must follow our rules about keeping your information safe. To safeguard rights, Mobistudy will only collect the minimum of information that identifies you (your name and email address) and this personal data will be detached from the questionnaire and smart device data and stored separately. The data will remain encrypted at storage and in transfer (HTTPS). Your data will remain on Mobistudy for as long as you keep your Mobistudy profile. You can read Mobistudy’s privacy policy at https://mobistudy.org/appPrivacyPolicy.html. Only the research team will have access to personal data, which will be securely destroyed three years after the end of the study.

Your questionnaire answers, smart peak flow measurements and data from the smartwatch will go through Mobistudy and be copied by the research team at the University of Edinburgh. The date, time, and IP address of your login and when you send data in Mobistudy will be logged for security reasons and kept for 5 years. The study team can’t access this data.

The data collected by the FindAir app belongs to you, the participant. Your inhaler data from using the FindAir will first go to FindAir’s server in Poland, it will then be downloaded and copied by the research team at the University of Edinburgh through encrypted connections (HTTPS). In order to use the FindAir app, you need to consent that FindAir is the data controller for the data collected with the FindAir app. Also, you would need to agree to FindAir’s Terms of Service and Privacy Policy in order to use their app and consent to allow the data to be shared with the research team. You can read FindAir’s privacy policy at https://findair.eu/privacy-policy-mobile-app.html.

Here’s the data we’ll be collecting in phase 2:

  • Peak flow (PEF) using the Smart Peak Flow Meter
  • Heart rate using smartwatch
  • Step count using smartwatch
  • Activity intensity using smartwatch
  • Location (GPS) using Mobistudy
  • Inhaler usage using FindAir ONE
  • Questionnaire data using Mobistudy 

 

Design Workshop

Online Surveys

This signup form will be answered using Jisc Online Surveys, a service provided by Jisc. Jisc acts as the Data Processor, processing the data according to the instruction of the research team. Jisc is hosting the systems in Amazon Web Services (AWS), in the Ireland availability zone.

Respondents on Online Surveys remain anonymous. Online Surveys does not use cookies for survey completion and external tracking software such as Google Analytics is not supported on Online Surveys. Additionally, the research team cannot access any information about respondents’ IP addresses.

You can read more about Jisc at www.jisc.ac.uk and how Online Surveys handles the data at https://www.onlinesurveys.ac.uk/gdpr/.

This signup form will ask for the following personal information:

  • Your name
  • Contact email address

The signup forms will be accessed by the research team. Your contact will be kept for three years from the end of the study.

Microsoft Teams

The workshops will be hosted using Microsoft Teams provided by the University of Edinburgh, you will join the meeting as a guest. Here is some information about Teams.

Teams is a video conference platform, which allows everyone to share video and audio. The workshop will not be recorded, but the text chat will be saved and accessible by members of the research team and other participants.

The opinions expressed within the workshop are solely that of the participants and does not reflect the views of the University.

You can read more about how Microsoft handles their data at https://privacy.microsoft.com/en-gb/privacystatement. You can read about the University of Edinburgh’s Teams security policy at https://www.ed.ac.uk/information-services/computing/comms-and-collab/office365/teams.

End of the study

The anonymised daily and weekly data from questionnaire and smart devices will be kept and archived in Edinburgh DataShare (a digital repository of research data produced at the University of Edinburgh) for ever. This will mean that data collected data from the study can be used by other researchers in the future who want to learn more about asthma and using smart devices to help patients with asthma. You can about Edinburgh DataShare’s service policy at https://www.ed.ac.uk/information-services/research-support/research-data-service/after/data-repository/service-policies.

At the end of the study, the eligibility questionnaires and consent forms answers collected via Online Surveys will be deleted.

Where can you find out more about how your information is used?

You can find out more about how we use your information

To contact a member of the research team, please do not hesitate to get in touch with:

Kevin Tsang, email: k.c.h.tsang@sms.ed.ac.uk

Dr Ahmar Shah, email: ahmar.shah@ed.ac.uk

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