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

The right to participate in policy-making
It is broadly acknowledged that patients (or their organizations or representatives) should
take part in developing health policies at all levels (national, regional and local). Patientcentred
care can only be achieved if patients’ views and experiences, along with other
relevant sources of information, influence policy-making. Recommendation 2 of the
European Council recommendation on patient safety stipulates that patient organizations
and representatives should be involved “in the development of policies and programmes
on patient safety at all appropriate levels” (7). There are many ways to realize this, varying
from consulting national patient organizations on policy issues to creating a legislative
basis for clients’ councils in health care institutions (for more details, see (25)).
Clearly, this right has an overwhelming collective dimension. It implies that
governments and health authorities stimulate and facilitate the establishment of
well-informed patient groups and organizations. At patient level, it is important that
individuals are free to participate in representative bodies and organizations and are
supported if necessary to develop the relevant skills and competences.
The right to information about the safety and quality of health services
If circumstances allow citizens to make a choice between providers of health services,
it is important that information about the safety and quality of the services rendered is
available. The right to information about the safety and quality of health services has
emerged as a consequence, allowing patients to choose the service provider that meets
their wishes: this is especially relevant in market-orientated health care systems.
This can be seen as an individual right, but collecting the relevant information (through,
for instance, performance indicators) can best be realized at collective level. Health
service providers must define the data available, which should be valid, comparable and
accessible through web sites, annual reports or other sources.
This right has a clear connection with the right to safe and good-quality health care,
which cannot be fully exercised in the absence of relevant information. The implication
is that health service providers must be transparent and accountable for the safety and
quality of their services. The right is relevant at national and international levels due
to increasing patient mobility and crossborder health care. Section 20 of the European
Parliament and Council directive of March 2011 on the application of patients’ rights in
crossborder health care (26) stipulates:
In order to help patients to make an informed choice when they seek to receive health care in
another Member State, Member States of treatment should ensure that patients from other
Member States receive on request the relevant information on safety and quality standards
enforced on its territory as well as on which health care providers are subject to these standards.
Furthermore, health care providers should provide patients on request with information on
specific aspects of the health care services they offer and on the treatment options.
The right to information on proposed treatment (informed consent)
The right to be informed about proposed treatment is one of the most crucial individual
patients’ rights (see, for example, (27)) (28). Valid informed consent for a medical
Patients’ rights and patient safety
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