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PROTECTING PATIENT CONFIDENTIALITY

5 THE WAY FORWARD

5.1 Current NHSScotland practice and culture must change if the requirements of the law are to be met and if best practice is to take full account of policy and professional aspirations. Our review has identified the following core requirements:

• Patients must be informed about how information about them is used.
  Section 6 considers how this can best be done.
• Wherever possible, data must be anonymised to remove identifying details.
  Section 8 considers how this may be achieved.
• If data cannot be anonymised to an acceptable degree, the patient has a right to object to their use, unless there is a legal or public interest provision which overrides that right. Section 7 seeks to identify categories of data flow and to match them to appropriate consent requirements.
• Section 10 considers whether new legislation should be proposed.

5.2 CSAGS proposes that the overall strategy should abide by the following principles:

5.2.1 The issue of transparency must be effectively addressed as most patients have little understanding of the way the healthcare community uses patient identifying information. If patients do not have a clear idea of how NHSScotland uses patient identifying information, they will be unable to give informed consent for its use.

5.2.2 Even when NHSScotland has patients' consent, good practice dictates that patient identifying information should only be used where there is an overwhelming case for doing so. It is always preferable to use fully anonymised information. If that is not feasible, the use of acceptably anonymised information is the alternative. Only if that proves impractical should information containing patient identifiers be used.

5.2.3 In the absence of legislation to the contrary, the norm should be that patient identifying information will not be used without patient consent. Consent, when sought, might be verbal or written but must always be informed and freely given.

5.2.4 Departures from this norm should only be possible where it can be clearly demonstrated that NHSScotland or care providers have taken reasonable measures to inform patients and where it is impracticable to gain consent or would not be the right thing to do. In situations where this arises with individual patients, eg because of continuing unconsciousness or the final stages of a terminal illness, then the clinician must be prepared to account for his or her actions.

5.2.5 CSAGS concluded that everyone in NHSScotland should be reminded of the principles of confidentiality. We proposed nine key principles in our consultation document. Having considered responses to the consultation, we have published proposed principles of confidentiality at Section 12 of this report. We think that SEHD should make sure that these are drawn to the attention of all those who work in NHSScotland.

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