Consented participants

Wherever it is possible, the study team will ask individuals for permission to use their data. Patients who are eligible for the study will be approached and asked for consent to use their data, and they will have the option to refuse consent or withdraw it later.

What information we need to collect

We will only hold information about your hospital admission if you meet the study criteria. We would like to access information such as:

  • Details of your hospital visit, such as date of admission and discharge
  • Tests or investigations that you had as part of your care during that hospital admission, such as X-rays and laboratory tests.
  • Diagnoses made and any treatment you were given
  • Details of the outcome of your hospital admission, such as whether you needed care on an Intensive Care Unit or if there were any complications
  • Personal information about you, such as your ethnic group, date of birth, NHS number and part of your postcode (the first 4-5 digits e.g. BS16 5).

How we collect and process this information

The NHS Trust controls the access to your medical records. If you are admitted to hospital with a condition that may meet the criteria for inclusion in the study (e.g. a chest infection), the research team will check if you meet our study criteria. If you do, we will explain the study to you, provide you with an information leaflet and obtain your consent (permission) to access your hospital data. Data needed for the study will be recorded by the research team in the IT system of the NHS Trust where you were admitted.

Your medical or health information is recorded in your hospital medical records in different formats, including paper, and electronically on computer systems. Your medical records will be accessed around the time you are admitted to hospital and at 30 days following that admission to check for information that was not available initially, e.g. test results that weren’t available at the time, date of discharge from hospital, etc.

The Avon CAP study is run by the University of Bristol; if you are approached about the study and provide consent to take part, the University is responsible for the information you give us during any interview or follow-up appointment relating to the study. The University of Bristol and research team decide how it is used to comply with your rights. Therefore, for the purposes of the Data Protection Act, the University of Bristol is the data controller for personal information it collects directly from you for the purposes of this study.

Avon CAP (University of Bristol) will:

  • Make sure that your records remain confidential and ensure our researchers handle the records in accordance with the Data Protection Act to comply with your rights.
  • Work together with the official organisations which collect your records to protect your privacy.
  • Respect your decision if you don’t want your information to be used in this way.

If you want to find more about how your data will be processed including your personal information, click on Use of your data.

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