You and Your Rights
The Data Protection Act 1998 (DPA98) sets the rules for the processing of personal information and applies to both manual and computer records. Sarah Cannon Research UK provides a Patient Guide to all patients which outlines your rights regarding how we hold and use your information. Patients are required to review and complete a Registration Form which confirms understanding and consent to treatment. The registration form and Patient Guide are provided to all patients. The Patient Guide outlines information about how we manage patient data, including information being processed for the purposes of:
- Treatment as a patient on clinical trial. This includes providing information about patients care to their GP and Oncologist at the end of their treatment, unless the patient specifically indicates they do not wish this to happen.
- The settlement of expenses related to treatment e.g. the information required by an insurance company in order to settle an account.
- Clinical audit to ensure high standards of patient care are maintained.
- Clinical audit within national programmes which monitor health and healthcare provision across the United Kingdom.
Wherever possible, we will anonymise data about patients before passing it on.
The DPA98 means that patients have a right to access information held about them either on computer or in manual records.
If you are a patient and would like to obtain a copy of your personal data held under the terms of the Act, please apply in writing to the Head of Drug Development Unit at 93 Harley Street, London, W1G 6AD. Please be aware that a copying fee may be charged for this service.
The confidentiality of patient information is of paramount concern to us. We fully comply with data protection legislation and medical confidentiality guidelines. We will share information about the progress of your treatment with your nominated contact unless specifically instructed otherwise. We share information on a need to know basis and strict guidelines are in place to ensure the information remains secure.
We are committed to meeting the provision of the Data Protection Act 1998. Everyone working at Sarah Cannon Research Institute UK has a legal duty to keep information about you confidential.
For more information, consult the Information Commissioner’s web site: www.ico.gov.uk
All patients participating in a clinical trial are provided with a specific patient information sheet relating to and the trial they are participating in and are given sufficient time to consider in detail what is involved. A follow-up appointment will then be set up where we will confirm whether a patient wants to participate and we take them through the consent procedure.
Only after a patient has consented to take part will we begin the screening tests specifically related to the trial.
You may decide at any stage before or once treatment has started that you no longer want to participate. You do not need to give us a reason why, although we are always happy to discuss the matter with you.