Public Information Booklet

Creating a safe environment for your personal medical information

Health research projects
Some medical research will directly involve patients. For example, taking part in a clinical trial (where a new treatment is being tried). If you are asked to participate in a trial, it will be fully explained, and your express consent required. If you do not consent, you will not be included in the trial, and this will not affect the standard of treatment offered to you.
Other research may not involve you directly, but may rely upon access to your clinical information. Some databases, e.g. the Cancer Registry, are set up for national research in the fight against diseases such as cancer. Research work, is guided by the Medical Research Council document "Personal Information in Medical Research". This represents the working standard for the use of patient information for research purposes. It sets out when and how researchers need to obtain your specific consent to access your information. You have the right to refuse access to your information for research. Researchers who have access to clinical information must protect confidentiality, and ensure that information stored for any research project is made anonymous, wherever this is possible. They must also present their research proposals before an Ethics Committee to check that their research is appropriate and worthwhile, and that data protection issues have been considered.

To help plan future health services
We need to be able to plan ahead so that the care provided is of the highest standard. It is important that health services should regularly review the quality of care they provide. We need to investigate how we provide treatment and care and this means getting information from patient records or sending out questionnaires. Where treatment is provided across a number of hospitals, it is necessary to share data using centralised disease registers in order to assess the overall treatment delivered. Some clinical information is therefore routinely transferred into approved disease registers, but access to this information is strictly controlled. When analysing the results of audits, anonymised and summary information is used - not individual patient information.

Managing the data
We need to process electronic information or move it between systems, extracting the data and modifying it for the next system. Data may also need to be transferred to a secure data archive on a different site. Occasionally, tests will need to be made on the data to check that it has been transferred correctly. This will only be done under carefully controlled conditions and all employees and contractors will be under strict contractual obligations to protect confidentiality.

What else do we do with the information?

• The NHS must, by law, notify the government of certain infectious diseases for public health purposes, e.g. measles, mumps, meningitis, tuberculosis, but not AIDS.
• Births and deaths must also be notified.
• Limited information is shared with Primary Care Trusts to assist with the organisation of national public health programmes, e.g. breast screening, cervical smear tests, and childhood immunisation.
• A Court of Law can insist that medical information be disclosed to them. On very rare occasions, organisations may divulge information to the police, if it is felt to be in the patient's or public interest.
• Solicitors sometimes request medical reports but these requests must be accompanied by your signed consent. Third party information, e.g. about or provided by your wife, husband or partner in the record will be withheld unless the third party has also given written consent.
• Life assurance companies frequently ask for medical reports on prospective clients. You have the right to request to see these reports before they are sent. All relevant information must be disclosed unless you have requested otherwise. In these circumstances, the insurance company must be informed that you have made this request.

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