About IMPPP for Study Participants
To view the participant information leaflet, click here - IMPPP PIL (PDF, 324kB)
How do I withdraw from the study?
If you decide that you no longer wish to participate, you should let the research team know either via telephone on 0117 331 13901 or via email on firstname.lastname@example.org.
Once you have told the research team that you want to withdraw, they will stop collecting data from your medical records, you will not be asked to complete any more study questionnaires or be invited to take part in any study visits. The research team will keep the research data about you that they already have.
What is patient data?
When you go to your GP or hospital, the doctors and others looking after you will record information about your health. This will include your health problems, and the tests and treatment you have had. They might want to know about family history, if you smoke or what work you do. All this information that is recorded about you is called patient data or patient information.
When information about your health care joins together with information that can show who you are (like your name or NHS number) it is called identifying patient information. It’s important to all of us that this identifying patient information is kept confidential to the patient and the people who need to know relevant bits of that information to look after the patient. There are special rules to keep confidential patient information safe and secure.
What do the terms 'data controller' and 'data processor' mean?
A ‘data controller’ determines the purposes and means of processing personal data. A ‘data processor’ is responsible for processing personal data on behalf of a controller.
Will the use of my data meet GDPR rules?
GDPR stands for the General Data Protection Regulation. In the UK we follow the GDPR rules and have a law called the Data Protection Act. All research using patient data must follow UK laws and rules.
Universities and NHS organisations may use patient data to do research to make health and care better.
Universities and the NHS are funded from taxes and they are expected to do research as part of their job. They still need to be able to prove that they need to use patient data for the research. In legal terms this means that they use patient data as part of ‘a task in the public interest’.
For the IMPPP study, the legal basis for personal data to be obtained and processed is Article 6 (1) (e) processing is necessary for the performance of a task carried out in the public interest and the legal basis for health information data is Article 9 (2) (i) processing is necessary for reasons of public interest in the area of public health and Article 9 (2) (j) processing is necessary for reasons of public interest in the area of research.
If the IMPPP researchers could do the research without using patient data, they would not be allowed to have your data.
Researchers must show that their research takes account of the views of patients and ordinary members of the public. They must also show how they protect the privacy of the people who take part. An NHS research ethics committee checks this before the research starts.
What is the IMPPP study informatics tool and how will it be used in the study?
The IMPPP study informatics tool is a key component of the IMPPP approach to medicines review. This computer software has been developed by BlueBay Medical Systems specifically for use in the study. A formal ‘Data Sharing Agreement’ between the general practice and BlueBay Medical Systems will be put in place before the software is installed at the practice. The BlueBay software will be installed and run from a server within the general practice. The software will be used by the practice to facilitate the recording, monitoring and collection of consented study participant data for use in the IMPPP study analysis. Consented study participant data will be pseudonymised by the software (i.e. the participants name will be removed from the data being collected for the purposes of the IMPPP study and replaced with a unique code) before being transferred to the research team at the University of Bristol. As per the BlueBay Medical Systems agreement with EMIS (e.g. the provider of the existing clinical software system used within the practice), BlueBay will only store the study data on the general practice server and no identifiable patient data will leave the practice.