Exploring patient participation in reducing health-care-related safety risks

» engaging with patient representatives in cases where patients are not (fully) capable
of voicing their wishes or exercising their rights because of (partial) incompetency
or other reasons; and
» appointing a patient advocate as part of a comprehensive complaint system.
The right to privacy
In an era in which information technology is rapidly expanding in health as well as in
other parts of society, it is crucial to protect patients’ privacy rights. Privacy in health
care is traditionally realized through the legal and professional norms of medical
confidentiality. As a general rule, health care professionals are supposed not to disclose
patient information to other individuals or parties except when legitimized by patient
consent, legal obligations or emergency circumstances.
Rules on medical confidentiality may create problems in the context of quality
improvement when, for instance, quality improvement schemes require coded or
identifiable patient information and medical confidentiality and/or privacy regulations
prohibit this. The same problem may rise in national or international medical research
into patient safety and quality of care. It is obvious that privacy protection is an
important part of individual patients’ legal position, but they (and patients of the
future) may benefit from the outcomes of quality assurance schemes and patient safety
medical research. It is important to balance the privacy interests of individual patients
with societal interest in improving the safety and quality of health care, if necessary by
allowing exceptions to the general rules on privacy and medical confidentiality. Adverse
event reporting procedures, for instance, may underperform if approaches such as using
identifiable patient data to check whether the reported information is complete or
asking for more information from the health professional who reported the event are
forbidden, at least in the first phase of the reporting process.
It can be assumed that, in general, patients do not object to their identifiable data
being used for quality and safety-improvement purposes. Important preconditions are
that patients receive general information about the possibility that their data may be
used and are given the opportunity to object, identifiable data are only used when less
intrusive options are not possible and adequate safeguards are put in place. 2
Additional aspects
Legal rights described in the previous section cannot be isolated from the context and
circumstances in which they are to be exercised and implemented. It will be difficult
to bridge the gap between legal provisions and the daily practice of health care if this
connection is ignored. A number of additional aspects should be taken into account
when working to empower patients through legal means.
2 This will usually require legislation. See, for instance, Article 60 of the Health and Social Care Act 2001 from United
Kingdom (England) (33) which, under certain conditions, allows the use of confidential patient information for quality
protection purposes. A similar approach can be found in the United States’ Patient Safety and Quality Improvement Act
of 2005 (18). The Government of the Netherlands introduced a bill in Parliament with a similar provision in 2010. More
extensive analysis of this legislation is provided by De Roode & Legemaate (34).
Patients’ rights and patient safety
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