Shouldn't patients decide who should access their records?
http://www.100md.com
《英国医生杂志》
EDITOR—Much misunderstanding exists in the NHS and other organisations about the Data Protection Act, but to deal with these concerns by granting clinical researchers freer access to confidential patient information, as suggested by Peto et al, would be excessive.1 2 The Department of Health last year published a code of practice on patient confidentiality that should ensure that custodians of medical records are aware of their responsibilities and when they can share patient data with researchers.
The Patient Information Advisory Group was also concerned by the authors' apparent view that obtaining informed consent from patients is a bad thing. Clearly, how common law around confidentiality and consent has evolved in recent years has caused some confusion and inconvenience in the research community, but surely there should be no objection to researchers being required to obtain consent from patients to use their confidential information if it is practicable to do so.
The advisory group was established in 2001 to oversee arrangements introduced under section 60 of the Health and Social Care Act 2001. Its responsibility is to ensure that a wide range of essential NHS activities—including research—are allowed to continue when no practicable alternative exists to using patient identifiable information without consent. However, the organisations undertaking these activities should be required to show that they are delivering benefits to patients, have considered alternatives to using patient identifiers without consent, will use the information obtained appropriately and store it securely, and will reasonably try to devise a means of either obtaining consent or working with anonymised information in the future.
Although many patients and members of the public support clinical research, they would also like clinicians to discuss with them how their data can be used to support this important work. The NHS intends to give patients choice. Is it too much to ask that this concept should be extended to allow patients to decide who can access their records?
Joan Higgins, chair, Patient Information Advisory Group
PIAG Secretariat, Department of Health, Leeds LS2 7UE piag@doh.gsi.gov.uk
Competing interests: None declared.
References
Peto J, Fletcher O, Gilham C. Data protection, informed consent, and research. BMJ 2004;328: 1029-30. (1 May.)
Correspondence. Data protection, informed consent, and research. BMJ 2004;328: 1437. (12 June.)
The Patient Information Advisory Group was also concerned by the authors' apparent view that obtaining informed consent from patients is a bad thing. Clearly, how common law around confidentiality and consent has evolved in recent years has caused some confusion and inconvenience in the research community, but surely there should be no objection to researchers being required to obtain consent from patients to use their confidential information if it is practicable to do so.
The advisory group was established in 2001 to oversee arrangements introduced under section 60 of the Health and Social Care Act 2001. Its responsibility is to ensure that a wide range of essential NHS activities—including research—are allowed to continue when no practicable alternative exists to using patient identifiable information without consent. However, the organisations undertaking these activities should be required to show that they are delivering benefits to patients, have considered alternatives to using patient identifiers without consent, will use the information obtained appropriately and store it securely, and will reasonably try to devise a means of either obtaining consent or working with anonymised information in the future.
Although many patients and members of the public support clinical research, they would also like clinicians to discuss with them how their data can be used to support this important work. The NHS intends to give patients choice. Is it too much to ask that this concept should be extended to allow patients to decide who can access their records?
Joan Higgins, chair, Patient Information Advisory Group
PIAG Secretariat, Department of Health, Leeds LS2 7UE piag@doh.gsi.gov.uk
Competing interests: None declared.
References
Peto J, Fletcher O, Gilham C. Data protection, informed consent, and research. BMJ 2004;328: 1029-30. (1 May.)
Correspondence. Data protection, informed consent, and research. BMJ 2004;328: 1437. (12 June.)