Building the secondary uses service NHS
Although the primary purpose of medical records is to support and
improve individual patient care, medical records can be used in other
ways (called “secondary uses”) to support and improve
public health and the health system as a whole by providing management
and research information. Thus the term “secondary uses”
refers to the use of data for purposes other than direct patient care.
In practice, this covers a very wide spectrum including:
- Improving the quality of local clinical care, for
example through the audit of clinical practice;
- Protecting the health of the public through surveillance of infectious
disease and other environmental threats to health, monitoring adverse
effects of therapeutic interventions, and informing and evaluating screening;
- Improving the management of the health system, for example by supporting
the more efficient commissioning of services and payment by results;
- Identifying patients who interact with multiple parts of the health
system in order to monitor equity of access and provision;
- Ensuring that health policy is evidence-based through carrying out
empirical research
- Providing better information to the general public about healthy lifestyles
- Improving the quality and safety of care or reducing the impact of
new risks to population health through for instance
o research by the patient’s clinical team
o research by others using data collected by the care team but involving
no contact with the team's patients, or
o research which requires further contact with patients or former patients;
There are many benefits from the use of information to support the above
activities. The health and well-being of the population are improved
by activities such as disease surveillance, screening, needs assessment
and preventative activities.
Research has led to major benefits in health practice such as the
treatment of duodenal ulcers, spina bifida and breast cancer, and
in the carrying out of hip replacements. Research has also reduced
risks through a greater understanding of HIV prevention, the relationship
between smoking and lung cancer and the effects of the use of aspirin
for children. In the UK as in other countries, regulation of new medicines
and other treatments relies on evidence of safety and efficacy from
clinical trials. Trials and other research also provide fundamental
evidence to inform guidance from the National Institute for Health
and Clinical Excellence.
The implementation of an individual Care Record for all interventions
with the English national health service provides an opportunity to
build an longitudinal information base across the whole population
with significant potential benefits both for public health and research.
In December 2005, the report of the UK Academy of Medical Sciences
on the use of data for research purposes identified a number of the
benefits of research. It also expressed concern that overly conservative
access controls might hinder research activity and hence reduce such
benefits.
This reinforces the need to ensure that “secondary use”
activities are carried out in the context of the Guarantee made to
patients concerning the use of their care records and within the legal
and professional obligations for ensuring confidentiality of personal
information.
There is currently a tension between the important opportunities
for using such data and the increasing need to safeguard patient confidentiality
in a way that builds trust and understanding. Differing interpretations
of the law and a lack of clear guidelines and protocols have led to
inconsistency of application.