Discussion Paper on
Health Information Bill
Submission
CORI Health Office
Introduction
We welcome the opportunity to comment on the proposed Health Information Bill as
set out in the discussion paper June 2008. We recognise that accurate health
information in vital in the planning of the health system. The health model in use
today is a “social determinant model” therefore any information gathered must
address health in a holistic manner.
It is recognise that health information today is both limited and fragmented and that a
Health Information Bill would making the system more coherent and responsive to
the needs of today and in the future.
Options
The development of the health information Bill will assist both the statutory and
non-statutory sector. It will be an important basis for the collection and distribution
of data recognising the very complex area that health is and the changing
demographics in society today.
The two options described in the paper have challenges as well as positive aspects.
While the paper highlights the strong the advantages for option 2 it must consider that
while building on what is already there could result in a less than seamless approach
to the gathering and use of health information.
The paper needs to recognise that information is found in many areas not just in
health but and wider society and this information needs between the format that is
available to all as the most appropriate level. Keeping in mind that health information
is personal and protection of this is the key factor.
Unique Health Identifier
There has been a commitment in many years for the development of a unique health
identifier this has many benefits them both to the person themselves and to society
While there are benefits there also concerns. It must be recognised that personal
health information must be protected so that it cannot be used in a negative way
against any individual. There needs to be a greater discussion on this issue so that
agreed processes and policies are in place to ensure that the individual may be
protected against abuse form within and outside the system.
Consent
It is important to recognise that consent is a key issue in the area of health data
collection, distribution and use. The paper recognises that consent is such an area and
it describes different types of consent.
Informed consent is vital when it comes to health information and its’ use(s). This
requires a very clear understanding of consent means. There is a need to have
safeguards in place to protect who are vulnerable in society and who may not be in a
position to understand fully the implications of consent.
This has implications for all groups will particularly those marginalized in society, ie
disability groups, ethnic groups, children and older people.
Safety
The issue that needs be addressed is that of safety of the information gathered and its
storage. This must be considered in the light of recent events where sensitive
information has been stolen and has the potential to be used for negative purposes. So
the Health Information Bill needs state how the information is to be protected.
Conclusion
In welcoming the consultation process for the Health Information Bill one must
recognise that this is a very complex issue and has far ranging implications both for
individuals and society.
Therefore it is important that the process be taken in stages and that engagement with
all stakeholders at each is important.
The Health Information Bill provides any opportunity for all health data to be
gathered and used in a positive way. To ensure this many issues need to be addressed
particularly those that affect the marginalised in society. This needs to be taken in
stages to ensure engagement by all stakeholders.
Inevitably there are issues regarding the individual’s right and the needs of society but
there must be a balance achieved so that the individual is penalised.