Why is access to Patient records so important?
Basic information in the database will help researchers select their study group, e.g. men with colon cancer under 45 years of age. However, detailed information from Patients’ charts may help explain the research findings, and might indicate why a particular group of patients is likely to have a better prognosis.
Will all Patient data be confidential?
Yes. All information will be confidential and secure. Each sample is labelled with a code and anonymised. The biobank database links the sample code to a particular Patient but this information is not made available to researchers. Databases will comply with the Data Protection Act. If at a later stage researchers require additional information, e.g. the type of treatment the Patient received, doctors and nurses collaborating in the research project can make this information available to them. Patients are made aware that their samples will not be sold for commercial gain, and that results of research may not be of direct benefit to themselves. Samples are freely given as donations to the biobank in the patient’s own hospital, which is guardian of the samples, but research may be carried out elsewhere. Donors have the right to have their samples withdrawn from a research project at any time. Patients have the expectation that their samples will be used, and researchers are obliged to make the best possible use of patient donors’ samples.