Cough Study Privacy Notice
Manchester University NHS Foundation Trust (MFT) is jointly conducting a cough study with Merck Sharp & Dohme Limited (MSD). NorthWest EHealth Ltd (NWEH) will be processing your personal data on behalf of MFT and MSD. This study aims to understand how many times patients are seen by health care professionals and how many diagnostic tests are performed before getting a diagnosis of refractory or unexplained chronic cough. The purpose of this notice to explain to patients how their personal data will be used during the study by all organisations involved.
During this study, we will collect information relating to how your chronic cough was diagnosed, what treatments you may have tried before your diagnosis of chronic cough, what other problems you may have with your health and how many times you have visited your GP or other Health Professional. This information will be obtained from both your primary care record (GP Practice) as well as secondary care (Hospital records).
We will also collect data from national data sets such as the Hospital Episode Statistics (HES) and diagnostic imaging (X-rays, scans) so that we can see if you have made any visits to hospitals and received any treatment for the same time periods. These data sets are managed by NHS Digital, a government organisation authorised to collect information from all organisations about patients who receive NHS services.
Please see the table below for the information each organisation will have access too:
Our legal basis for processing under the GDPR is the following:
The lawfulness of processing: Art 6(1)(f) processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party
Processing special category data: Art 9(2)(j) processing is necessary for scientific research purposes and provides for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
The information collected in relation to this study will be retained for the duration of the study which we expect to last no longer than six months. After this date, it will be securely erased and only the anonymised results will be retained.
Data protection law provides individuals with specific rights to their personal data. Please bear in mind that certain rights may not apply for clinical research. Please contact our NWEH nurse team at 0161 519 8989 should you wish to exercise your data protection rights. Additionally, should you feel that we have not adequately addressed your concern, you also have the right to complain to the UK Data Protection Regulator (https://ico.org.uk).
Your information will not be used for automated-decision making or profiling. The information will instead be anonymised and reported based on aggregated results.
Your personal data will be retained in the United Kingdom and all IT systems used to meet the security standards as defined in the NHS Data Security and Protection Toolkit. We do not anticipate that you will need to be contacted and do not require any further action from you.
For more information, including contact information please see our respective privacy policies Merck Sharp & Dohme Limited (MSD) (https://msdprivacy.com) and Manchester University NHS Foundation Trust (MFT) (https://mft.nhs.uk/privacy-policy).