Acclaim Otago president Denise Powell, of Dunedin, said the organisation had "become concerned that there is very little independent data available to accurately describe an injured person's experience with ACC".
"We are also concerned that people may be being exited from ACC without first receiving meaningful rehabilitation," Dr Powell said.
ACC recently emphasised rehabilitation always came first, but "we have no simple way of finding out if this is correct or not", she said.
This was "especially obvious" when talking about rehabilitation and the "vocational independence" assessment process.
"ACC does not currently keep data that identifies what happens once a person exits the scheme and we believe that is a huge gap.
"We are hearing anecdotally that people are being exited from ACC without first receiving meaningful rehabilitation." This survey aimed to find out "some of what happens to people who are [current or former] clients of ACC".
"New Zealand has spent billions of dollars on ACC. There's actually no measure of how well it works," she said.
"We hope to use the survey results to make recommendations that will substantially improve the experience of injured people in New Zealand.
"We believe any improvements we can identify to the scheme will benefit not just the ACC and their clients, but potentially generations of New Zealanders to come."
Acclaim Otago (Inc) supports injured people and their families, and has been an incorporated society since May 2003.
In a note for survey participants, Acclaim officials emphasised "the individual results of this survey will in no way be shared with ACC and no identifying information will be released to ACC".
"The aggregated information will be used to identify systemic problems with the ACC scheme," the note said.
Participants can remain anonymous.
"We really hope you will help us collect survey results with which we can make recommendations that will substantially improve the experience of injured people in New Zealand," it said.
Dr Powell is also a member of ACC's Consumers' Outlook Group (COG), an official liaison body which brings together community representatives and senior ACC management.
The lack of follow-up data after long-term ACC claimants had been exited from the scheme had previously been raised at COG meetings, she said.
The independent survey, organised by Acclaim Otago and launched this week, was being undertaken because of "frustration" over a lack of action to remedy problems.