National Amputee Database -  Discussion Paper and Instrument of Consent version 6.1  (20 July 2000) (*Minor ammendment 15/8/01) This has been identified by the ALS administrators, health professional groups and amputee associations as an important step towards  improving services and information for the benefit of Australian Amputee recipients of Artificial limb services.   Data Statistics Introduction Database Contents Data Gathering Use of the Information Requests for Further information Instrument of Consent Timeline A question and Answer outline of the National Database

Introduction

There is a need to establish a central information base of all Amputees. There is no current system of identifying the number or distribution of amputees or their prosthetic devices on a national basis. There is no reliable and complete data for planning or research exercises.

With the devolution of responsibility for the Artificial Limb Schemes to the various States, there is no opportunity to create such a database through a sole Commonwealth Department. Thus it will require the cooperation of all State schemes, public and private providers and the industry in general.

By its very nature, the database needs to reside in a central location which is governed by policy which obliges confidentiality. Neutrality (in a State to State sense) is also desirable. In order to facilitate utilization, a website is required and de facto, the capacity to maintain and refine a website is required.

Parties included

• Amputee Management and support organisations - *Prime sources of information. It is expected that the information will come from the amputees and treating clinics or units. This DOES NOT mean that these groups will have to do the work of gathering and managing that information, other than what is already done as part of routine contact or treatment. (see Questions and Answers). Software has been designed and supported to help clinics in these tasks as well as provide statistics to the National database.
• State ALS Managers - Prime collaters and managers of information and confidentiality issues.
• REHABTech. - Monash University, Independent National amputee resource- Prime presenters of information by software and web presentation. ( including compliance to the Commonwealth Privacy act )

Protocol for use of information

Given that the primary purpose of the database is to support ALS activities and research, it follows that the information should include appropriate demographic, prosthetic and utilisation data. It is proposed that the ALS (or its equivalent) of the various States and REHABTech. be the only standing users allowed. Any and all other requests for access or information or use of the information within the database would have to be meet established criteria and approval by ALS Manager’s Forum.

The Database contains the following data:

• Date of Birth
• Last Known Post Code
• Gender
• Status (Active, Inactive, Deceased, Private, etc)
• Benefit Card type (to determine ratios of card holders to non-card holder)
• File Number (if ALS client or Other ID if Private Patient to uniquely identify the record)
• Amputation date, type and cause
• Prosthesis data (Prosthesis suitability, ID number, Status, Process Date, type and cost, included components, usage rating, repairs and supplies, etc)
• Funder (ALS, DVA, Workers Insurance, Private Insurance, Privately funded)

Data Gathering:

The contributed information from all areas shall be contained in a database maintained by REHABTech. In those areas where the current data is held on a compatible database, an initial data transfer would be carried out electronically followed by quarterly updates. If the client data is not held on computer or is not compatible then one would suggest the establishment of a basic database and then transfer the data. Particular encouragement should be provided to the private prosthetic service providers (PSP) to submit data on their private patients (i.e. not funded by ALS).

Use of the Information:

The primary use is the determination of general epidemiological information such as age distribution, frequency of cause of amputation or type of amputation, geographical distribution of amputees, etc.

Performance indicators may be calculated to allow comparative studies and establish realistic outcome goals. Cost and reliability indicators may also be produced.

In the case where a product is being recalled as its use may pose a potential risk to an amputee, the ALS Manager’s Forum may authorise the generation of a list of file identification numbers which can be translated by an individual ALS or private supplier to contact an individual amputee.

Requests for further information

To support academic research activities, general subsets of the data may be produced. The retrieval of specific data for research purposes requires a specific request in writing outlining what is sought and why and requires approval of the ALS Managers Forum.

Should the request seek any information which could identify an amputee as an individual, then the researcher must provide the endorsement of the project from the appropriate ethical body of the organisation to whom they are associated and the endorsement of the peak voluntary amputee organisation prior to the ALS Managers’ Forum’s consideration of the request. Only after this, will the appropriate agreement of any individual(s) be sought.

An individal ALS may choose to act as agent for information in order that details remain within the ALS administration e.g. mailout.

I,____________________________________________, acting within the scope of authority exercisable by me, hereby consent to the publication and dissemination, by the REHAB Tech of State amputee database statistics*.

I recognise that publication and dissemination of the statistics detailed below may not enable the identification of any organisation, contracted manufacturer or service as the sole or major contributor to those statistics.

I recognise that the release of information which may lead to the identification of an amputee is restricted to those occasions where it is justifiably clear that the release of this information is consistent with the duty of care to the amputee.

Database Statistics* to be released are under this consent include:

• Date of Birth
• Last Known Post Code
• Gender
• Status (Active, Inactive, Deceased, Private, etc)
• Benefit Card type (to determine ratios of card holders to non-card holder)
• File Number (if ALS client or Other ID if Private Patient)
• Amputation date, type and cause
• Prosthesis data (Prosthesis suitability, ID number, Status, Process Date, type and cost, included components, usage rating, repairs and supplies, etc)
• Funder (ALS, DVA, Workers Insurance, Private Insurance, Privately funded)

Signed _________________________________ Dated _____________________

Name of Organisation _____________________________

Position in Organisation _______________________________________________________

Mailing Address of Organisation _____________________________________________

_____________________________________________

Timeline:

In practical terms, the full implementation (and thus benefit) of this National Registry will take a substantial amount of time simply due to the lack of computer based information in many areas. However, the infrastructure can be established readily and data from currently functional databases could be quickly accessed.

Step 1 Set up of Database at REHABTech by April 1, 2000 Done!!! - View Sample!

Step 2 Data transfer from existing databases by June 1, 2000 Currently delayed - contact secretary

Step 3 In use by July 1, 2000 Currently delayed - contact secretary

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