DATA BASE DESIGN REQUIREMENTS.

Finally after examining all of the issues relating to the cause and effect of MCS, requirements were then listed.

The following are what we believed were necessary fit the database was to be a useful tool for research, policy development and support.

The database design is reflected in how the forms were designed and was considered essential to be a two part design.

SECTION 1

This is the public domain area to provide information to research, government departments and policy developers.

Here all Victims will be assigned an alpha-numeric number to protect their privacy and confidentiality.

No names or addresses will be used to identify the individual.

What will be shown on the web site will be a listing of Victims and such information that is deemed necessary for research, yet protect their identities.

Information required here will be: -

Environmental background, i.e. where you grew up.

This will assist to identify some of the danger areas.

To provide appropriate Support Services.

To help develop adequate OH&S regulations and accountability.

Employment history

Employment histories will provide information that might alert employers and government to possible danger areas

It is important to include Home duties here as the home is often a major source of problems, cleaning, gardening, etc.

This will perhaps assist to ensure chemicals are modified in use as well as makeup.

MEDICAL AND HEALTH PROFESSION

While names of doctors or specialists treating the victims will appear in section 2, they will only be referred to as a yes or no to treatment received.

Patient privacy and confidentiality and ownership of information.

This is a contentious issue, especially ownership of material.  Doctors will rightly refuse to divulge information about their clients.

Limitation on such information

We understand that and recognise that there will be limitations on such information from doctors, specialist, hospital and clinics.

A comment from the treatment centres and doctors would be appreciated and if the patient agrees then some comment can be included.

Limitation of information from hospital we would believe would be very limited.

The reason being is that, based on experience, mist victims go to a hospital as a line of last resort.

The reason may be because of heart, kidney or other failure, due to the fact that these amenities are toxic to the victims.

Often the patient is not always aware they have been taken

Because such amenities are toxic areas because of the high use of chemicals, they acerbate the problem, making it difficult for the correct diagnosis to be made.

Information from these areas may be tainted but needs to be documented.

It would also need to be consistent to complying with the Privacy and Confidentiality Provisions.

Respite and aged Care need also be included.

This alone points out the urgency of the government making available chemically free facilities, staffed with people who understand that chemically free means they too must be free of the use of chemicals.

Unless staffed by people who understand the problem then it will not help MCS victims.

Contractors and cleaning staff must be trained in alternative cleaning processes

NOTE:

Perhaps some of the staffing could come from Victims who are not totally disabled with this condition.  At least they would understand many of the problems and the need for a chemically free environment.

This is an issue that could receive further discussion from members within the various support groups.

Please contact us with your comments

MCS Victims

Many victims when presented to the normal faculties are not always coherent, are emotional on a roller coaster and it increases as soon as they come in contact with chemicals within e.g. hospitals.

SECTION 2

Section 2 or Part 2 of the document will include names and addresses of doctors, specialists, hospitals, clinics attended and why.

Section one will not provide personal information and will comply with the privacy laws.

This information will not be made public but will remain on a separate database and will not be released without Victim or there legal representatives written approval.

In both section please include a short summary of when and how you became effected.

Where hospitals and doctors are unable to make a diagnosis, but the patient believes the condition is related to chemical trauma, please provide a summary as to why you believe this is the reason, i.e.

Contact may be either one off, or regular contact with some chemicals.

This might be from agriculture or garden spraying weedicide or pesticides.  It may be aerial spraying or spray drift.

It may be industry  products using chemicals for the processing, etc. the patient.

We understand that many victims have a fear of providing information that may identify them.

However we can only stress the fact that the success of this database lies very much in the hands of the MCS Victims.

Little action will come from governments and companies until there is sufficient information available.

From our point of view we believe that having written this document we are showing the objectives of the project.