Questions and Answers regarding the National Database of Amputee statistics

Questions and Answers
regarding the
National Database of Amputee statistics

Introduction:

The national ALS managers forum has been discussing the issue of the implementation of a national database for approximately two and a half years, with the details appearing in many forums including website, TechLINK, pre - ISPO conference forums.
the central focus in preparing the database is to have a resource for comparative, research and predictive purposes.
The data is to be purely statistical and would not identify any patient personally.
a draft proposal has been available for viewing on the ALS website for several months at www.alsa.org.au/national.htm
most discussion has centred around which data is appropriate for collection / which data will be the most useful. As this is a voluntary system, it is important that the data contributed will form part of the useful data reports to the contributors.

A number of States and Territories have committed to the database and the projected start date was July 1^st 2000 (already passed). The first release of the National Database would go ahead soon.

Questions and Answers regarding the National Database of Amputee statistics:-

What will the statistics be used for?

The intention is for research, planning etc. A minimum amount of data reports, as outlined on the website, would be made available. Currently this is:

Clients by Age Group
Clients by Gender
Numbers of Amputation by type
Cause of Amputation
Count of Amputees by Weight Range

(This would only change with the agreement of all signatories (or their nominees).)

The Draft discussion paper has outlined a process by which further data can be accessed. This would involve an approach to the ALS managers' forum which would vet the request and make a general recommendation which may include a dummy sample of the way the data would be prepared for a request. That request (with the vetted report) would be forward to all the signatories (or their nominees) for data provision (Instrument of Consent) for approval. The signatories (collectors/contributors of the data) would have the right of veto (and outline a reason) to any such request. The request will only proceed through the National database if all signatories agree or the data of the objecting contributor will be excluded and so noted.

Eg. An Amputee Association receives a grant to set up an office for their activites on the Northern NSW coast. They request form the National Database which regions north of Newcastle have high amputee numbers. The ALS Managers forum considers this a valid request and suggests a format and outline is prepared that can be presented to the signatories (or nominees) of the Instrument of Consent for the National database whose data would be used. (likely signatories, NSW, QLD.)

REHAB Tech, as secretary, prepares the request, recommendation, sample (not true) data and organises a meeting to present all the information. If this is agreed to by the signatories, REHAB Tech prepares the real data and forwards it to the Amputee Association.

Eg.

PostCode Range (only for North.NSW)	Numbers of amputees
2100-2199	145
2200 - 2299	36
2300 - 2399	567
2400..etc etc	Etc….

What about the Medicare number, isn’t that too specific as it can identify a patient?

It was only intended that the Medicare number was used as an electronic check against duplicate records. As there is concern about the fact that this has the potential under extraordinary circumstances of identifying a patient, it has been removed from the National database. How is data released and who will have access? All contributors will have priority access to data however they will have to apply for access as outlined above assuming they are requiring more than the minimum amount of data reports. All contributors will also be able to request and receive any* report on their own data without going through the request process.

(*this assumes they cannot prepare the data themselves and the request concerns exclusively their own data).

Outside bodies will always have to request data and provide substantial justification before their request will be considered. (as above). All signatories (or their nominees) will be contacted for approval before data is released in this instance (as above).

Who decides what will be included as a minimum data set? The ALS Managers Forum has arrived at the minimum data set as outlined in the Discussion document after consultation and discussion over the past two years with a number of different groups. The intention of the minimum data set is outlined in the Discussion Paper. When selecting these factors were taken into account which included, privacy of patients, demographic data for planning or research and safety issues in relation to product information or recall. How will the data be collected? There are many mechanisms that can be used to collect the data for the National Database. REHAB Tech recommends the use of the QALS software as there has been substantial input into the design of this to be both a useful tool for the practitioner as well as easily exporting the National Database data.
This software is designed to assist clinics, service providers and administrators with their day to day functions and at the same time allow the interface to a National Database.
This software is currently in use extensively around Australia and is being very well supported by Ron Simard (QALS) and REHAB Tech.
Data can also be submitted without this software, as long as the information is in a similiar form to that requested below.(minimum data fields) Who provides the funding for doing the National Database work? As mentioned previously, the data collection and contribution is voluntary and hopefully part of the service and activities of the groups that are contributing. REHAB Tech as an independent provider of support to the industry is doing so within the terms of its Commonwealth agreement to provide ongoing information, support and research. What are the minimum data fields and how are they defined? Although a minimum data set has been defined and agreed to, it is not expected that all of these data fields will be complete for all contributors. However, this minimum data set has been defined as the data which can provide useful demographic data for planning, research, emergency and product recall purposes. It is also expected that contributions to this dataset regarding additions, modifications or deletions will occur with use of the database over time.

The minimum data fields in the Draft version discussion paper are:

Date of Birth
Post Code (Last Known)
Gender
Weight - (in kilograms)
Status

Active - currently accessing prosthetic services
Inactive - has not accessed services within last ten years
Non prosthetic client - accessing amputee services, but not prosthetic services
Deceased
Others - not identified separately but data may contain/combine categories such as; visitors from other State or Country, suspended from services, compensation claimant (settled/ not settled), incarcerated etc.

Benefit Card type

This relates to the eligibility or client contribution requirements in some schemes.

File Number - (unique identifier)

This is a unique identifier created by "QALS database" using a combination of the clients numeric file number and the Prosthesis Registration prefix in the database (example: Client File Number 356 in Western Australia would have a file number of W356) or the manual contributor of information which specifically identifies the source of the data to the contributor alone (example Bendigo could use BExxx). The only consideration to avoid duplicates would be to assure that all contributors used a different Registration prefix! This identifier means that no patient identifying information is held at the National database. The unique identifier also assists the contributor of the information if any data is required for research or recall purposes as REHAB Tech can prepare data (as discussed above) and forward the data with the unique identifiers to the contributors of the data.

Eg. There is a serious failure issue with product X-28 from Company ABC. The company has prepared a statement of how this issue should be dealt with and how to claim back costs associated with a recall of clients with this component. (This is what may be required under Australian legislation).

REHAB Tech prepares a list of "clients" identified only by file number and forwards the individual list to contributors with the prepared drafts of letters for the centre, prescriber, clients etc. This can expedite action on an emergency issue such as a recall.

The individual lists would only be relevant for the individual contributor of the data.

Contributor A (XYZ-Health Service)	File Numbers with Component X-28
	A23 A456 A345 A2234 A456 A23678… etc.
Contributor B (Dept of H&H)
	H456 H7389 H7867…. Etc.

Amputation date
Amputation side
Amputation type - The current definitions which are in use and have been agreed to by a number of parties, however it is also expected that contributions to this sub-dataset regarding additions, modifications or deletions will occur with use of the database over time.

Description	Limb	Type Code
Ankle Disarticulation	L	AD
Con Limb Short. Lower	L	CLSL
Con Limb Short. Upper	U	CLSU
Elbow Disarticulation	U	ED
Fore Quarter Amputation	U	FQ
Hip Disarticulation	L	HD
Knee Disarticulation	L	KD
Partial Foot	L	PF
Partial Hand	U	PH
Shoulder Disarticulation	U	SD
Trans Femoral	L	TF
Trans Humeral	U	TH
Trans Pelvic	L	TP
Trans Radial	U	TR
Trans Tibial	L	TT
Wrist Disarticulation	U	WD

Amputation cause - The current definitions which are in use and have been agreed to by a number of parties, however it is also expected that contributions to this sub-dataset regarding additions, modifications or deletions will occur with use of the database over time.

Cause

Circulatory

Congenital

Infective

Inflammatory

Neoplastic

Neurogenic

Parasitic

Traumatic

Other

Prosthesis data

ID number - This is a unique identification detail of prosthesis. . (It is created by the QALS Database automatically as in the File Number above.) This is a unique identifier created by contributor of information which specifically identifies the source of the data to the contributor alone! This identifier means that no Client identification information need be held as only prosthesis identifying information is held at the National database for any important identifying reason. The unique identifier also assists the contributor of the information if any data is required for research or recall purposes as REHAB Tech can prepare data (as discussed above) and forward the data with the unique identifiers to the contributors of the data. It also allows for any further analysis to be done on a per prosthesis basis as well as a per client basis.
Status - The status if a particular prosthesis;

pending -

current -

expired -

cancelled –

Limb type The current definitions which are in use and have been derived from historical categories which are still in widespread use, however it is also expected that contributions to this sub-dataset regarding additions, modifications or deletions will occur with use of the database over time

Type Code	Description
1A	Std Work Arm BE
1B	Std Work Arm BE Self Suspending
1C	Std Work Arm BE Harness Suspending
1D	Std Work/Dress Combo BE
1E	BE Rigid Hinges
1F	Partial Hand
2A	Std Work Arm Above Elbow
2B	Std Work/Dress Combo AE
2C	Modular Dress Arm AE
2D	Elbow Disarticulation
3A	Shoulder Cap
3B	Shoulder Disarticulation Mod Dress
3C	Std Shoulder Disarticulation
4A	Legs - Syme
4B	Legs - Syme Compressible Liner
4C	Partial Foot Lynadure
5A	BK PTB - Soft Plastic Liner
5D	BK PTS - Soft Plastic Liner
5E	BK PTB - Modular - Kemblo Liner
5F	BK PTK - Pelite Liner
5G	BK PTK Modular - Pelite liner
6A	BK - Thigh Lacing Slip Socket
6AM	BK - Thigh Lacing Slip Socket - Modular
6B	BK - Conventional Thigh Lacing
6BM	BK - Conventional Thigh Lacing - Modular
6C	BK Ischial Plastic/Leather Thigh
6CM	BK Ischial Plastic/Leather Thigh - Mod
7A	Knee Bearing Isc Bearing Plastic Modular
7B	Knee Bearing w outside Irons Leather lacer
7C	Knee Bearing w outside Irons Palstic lacer
8A	AK Wooden/Plastic Suction Socket
8B	AK Wooden/Plastic Suction Socket-Modular
8C	Stubbies
8D	AK Extension Standard
8E	AK Extension Modular
9A	AK Susp w/p Socket Leaher belt Pelvic Joint
9B	AK Susp w/p Socket Modular r belt Pelvic Joint
10A	Hip Disarticulation Can Hip Standard
10B	Hip Disarticulation Can Hip Modualr
11	Silesian Bandage
12A	Check Socket
12C	Silicon Liner - Upper
INT	Interim Limb
SP	Special

Cost
Included components- component name and code would be used especially for product recall.
Repairs; type to a particular prosthesis (major / minor), aquittal date, justification and cost
Supplies; date, description, cost : to a particular prosthesis
Usage rating - a nine grid scale. (see below) - it is also expected that contributions to this sub-dataset regarding additions, modifications or deletions will occur with use of the database over time.

Date Prescribed – the date the script for the prosthesis was raised
Cast Date – the date the client had his first cast taken as the initial step in provision of the service
Trial Date – the date the client was fitted with the item and allowed to trial its use
Acquital date - the date the prosthesis was accepted by the client and a quality check out process was completed.
Date replaced – the date the prosthesis "expired" that is replaced by another prosthesis

Funder for prosthesis

ALS
DVA
Workers Insurance
Private Insurance
Privately funded

What if we cannot provide data for some of the fields? It is not expected that all contributing bodies will be able to provide all of the information required for all of the fields at the outset. Blank field or fields not submitted at all will be listed in the National database as unknown categories or data. The percentage of data derived form fields will be monitored to establish whether the field needs to modified, included or excluded. This will also assist in identifying if particular contributors require assistance with the definition or gathering of data for particular fields. What if we cannot provide any data but wish to contribute to the National database? There is always some data that is available to contribute. In order to simplify the data collection process initially it is envisaged only data already available will be sought for the commencement of the National Database. This varies depending on the centre, State etc. however there is some minimum data which should be available under the legislative requirements which the unit operates which may include:

State Department of Health - requirements for provision of services to eligible Australians
State Artificial limb program - -requirements of eligibility and minimum data required for services and reporting
Therapeutic Goods administration - obligations in the event of a product recall.
Trades Practices act - obligations in relation to product/service provision.

There may also be data kept for other reasons or requirements that can be contributed. How will clinics/organisations/units (contributors) be compensated for collecting the data? The National database is coming about through voluntary co-operation of organisations with an interest in better and more efficient planning and research for the provision of services to amputees within Australia. It is not desirable to make the National database a commercial concern and therefore it will not be generating any income which it could return to the contributors as compensation. However as the contributors of data are the one with the most input into which data is collected and how it is manipulated, it is expected that the data reporting will be in a format that is very useful to the contributors for their own planning or research. Are we identifying individual amputees? No!

There is no possibility that the National database will be able to identify individual amputees. There is two reasons why this is so.

The contributors of the data only forward statistics to the National database. These are tied to a file number and it is only the contributor who can relate the file number from the statistics to the actual client they relate to.
The National database results are proofed by REHAB Tech to ensure that there is no statistical information that could identify a client.

Eg. The database shows that there is only one upper limb - trans-humeral - traumatic - male amputee - age 50-60years. As it would be reasonable to assume that this could be a high profile sports person, the data would be lumped together with the unknown, or other single figures. In this way the data would be presented as:

Other: 75 including: (unknowns, partial foot, trans-humeral, hemi - pelvectomy etc)

Are we identifying individual clinics, organisations or prosthetic service providers? The National database contributors will be the "common denominator" in terms of identifying where the data has come from. The contributors (or their nominees) may find it useful to compare themselves to the National database. They may also find it useful to have the data presented in a way that the contributors are identified HOWEVER this would be done using the process of submission and veto outlined above. If there is an objection, that contributors data would be excluded and so noted and therefore it would not be used for feedback to the other contributors, or released for other purposes. REHAB Tech would also ensure that, by exclusion, a particular organisations data is not specifically identified, again by combining it with "unknown" or "other" data fields.

If this is the case, that there is only a few contributors of a particular data field, the "unknown" rate will be known and will likely be very high. If it is significantly high then it will be obvious that that data does not represent a national average. (This is a far better scenario than the present where data is extrapolated form very small sample or from overseas statistical information.)

REMEMBER: The National database does not interpret the data, but presents data it in a way that contributors may find useful for their own interpretations.

Who owns the database? The collector and contributors of the data actually own the individual datasets. Currently committed to a National database are ALSs within Australia, which are (typically) linked to Departments of Health in each State or Territory. In some cases, the collectors of the information have collaboration with other groups such as private or independent service providers (including the prosthesis or other services). Groups may choose to become independent contributors or to submit to an organisation already contributing in their State (or territory) such as an ALS or Department of Health. (In this later case, they may wish to have their own agreement regarding the contribution of information.)

RehabTech is the facilitator of the National database. Whilst the unit holds, co-ordinates, prepares, presents etc the information, it does not own the individual data. The individual data remains the property of the contributors.

Should private providers contribute to the database? Yes, anyone may contribute to the database as outlined above. Should/could private providers have control of the database? Whilst any contributor can access their own figures, access to the National database would be limited to the guidelines already mentioned. Requests for data specifically for commercial reasons would almost certainly be rejected when submitted to the ALS forum even prior to seeking approval from contributors (or their nominees). A commercial reason would have to have significant service or other client benefits prior to progressing to the next step.

There is no feasible way that any private concern could have unauthorised access to or control the National database.

So patients who pay privately will not be included in the database? "Private" patients can be inputed into the database with the same procedures as outlined above. Private patient data may come via another organisation or private providers may be signatories as contributors to the National database. This data is protected in the same way as any of the data.

It is obviously desirable to have as complete a National database as possible and as previously stated that requires voluntary collaboration from many different areas.

Will a clinic that does not prescribe prostheses still provide information to the National database? "Non prosthetic" patients can be inputed into the database with the same procedures as outlined above. This patient data may come via another organisation or clinics may be signatories as contributors to the National database. This data is protected in the same way as any of the data.

It is obviously desirable to have as complete a National database as possible and as previously stated that requires voluntary collaboration from many different areas. This voluntary collaboration will be encouraged by the fact that there will be useful data that can be reported back to the contributors.

Contributors would only contribute the type of data that would be useful if it was fed back on a national scale

Will there be a cost involved in using tools that have already been established for exporting to a National database? There are several ways to prepare the data for the National database and there are tools already in existence that will allow you to do so.

One such tool is what is known as the QALS database which has many aspects that it can perform from clinical attendances to stock inventory (via the REHAB Tech additions). This program has been designed to allow different types of organisations to conduct their own affairs, but still allowing the exchange of information where relevant. This program has a function which allows the export of data directly to the National database.

This program has been heavily supported and updated by QALS (Queensland Artificial limb service) and REHAB Tech. Use of QALS software is not compulsory.

What is the role of REHAB Tech ? REHAB Tech as an independent, University based, industry support organisation. It is not aligned with any commercial organisation, professional association or State/Territory. REHAB Tech receives Commonwealth Government support for this Australia-wide role and as such is bound by the Commonwealth privacy act, which all staff and placements at REHAB Tech must sign. As part of Monash University, REHAB Tech has the ability to provide the technical platform for processing and presenting the data.

These factors make REHAB Tech the ideal independent, central facilitator of the National database.

How can we be sure the database will be used in this way? People are sceptical of those who collect data and how it is then used. The database is being established as a tool for better planning and research. The database itself does not draw conclusions or establish policy. The contributors to the database will be the ones who are most likely to gain the greatest benefit from this. There is no restriction as to who can be a contributor.

There will always be people who for one reason or another are sceptical or immediately negative. The use and protocols for the National database are outlined above and there are professional and legal reasons why the database will be used as outlined above and not used in some "unforseen, secretive or negative " manner.

What if we are contributing to the national database, but at some future stage, wish to terminate our provision of data? As this is a voluntary system there is no obligation by any contributor to continue to provide data. (It would be desirable to receive a letter of termination from the contributor.) Return to ALS Managers' Forum Home page.

Further information can be obtained by contacting:
Secretary, ALS Managers' Forum
c/o REHABTechrehab.tech@eng.monash.edu.au

Building 35 Room G19
Clayton Vic 3800 AUSTRALIA Tel. (IDD +61 3) 9905 3466
Fax. (IDD +61 3) 9905 4069

Copyright & copy; 1998 Monash University - AllRights Reserved - Disclaimer
Authorised & Maintained by RossStewart, Rehabilitation Engineer
Last updated: 15 August 2001

Disclaimer

This is an organisation personal page published by the REHABTech on behalf of the Forum for Artificial Limb Service Managers. The ideas and information expressed on it have not been approved or authorised by Monash University either explicitly or impliedly. In no event shall Monash University be liable for any damages whatsoever resulting from any action arising in connection with the use of this information or its publication, including any action for infringement of copyright or defamation.