Some participants in the study reported feeling their doctors judged them by where they lived and what they looked like, didn't listen, or dismissed their questions. The participants knew sore throats could lead to rheumatic fever and should be swabbed, but some had to push to get a swab taken.
The study found the time taken to diagnose acute rheumatic fever varied from straight away to four months. Two children were only diagnosed when they were admitted to hospital with other illnesses; delays occurred even when whanau said they thought their children had rheumatic fever.
Kaitaia-based O'Sullivan, who is known for his work combating rheumatic fever, said he backed the study's findings ''120 per cent''.
Although run-of-the-mill economic factors around access to healthcare played a part in delayed diagnosis, the bigger problem was ''the complete mismatch between what the doctor thinks is going on and what the patient thinks is going on''.
A particular problem in high-need areas such as Northland was that some practices relied on short-term locum GPs flown in from Europe or the US, who had no understanding of rheumatic fever.
A case was now before the Health and Disability Commissioner of a young Hokianga woman who wasn't listened to, even though she and her parents clearly communicated her symptoms. The delay in diagnosis had caused significant harm, he said.
''Instead of studying and trying to get ahead, this young woman is languishing on a sickness benefit and waiting for surgery, while the doctor has gone back to Europe.''
O'Sullivan believed every case of rheumatic fever should be audited to find out where the patient had been let down, so improvements could be made.
The study's lead author, Anneka Anderson, called for an effective quality improvement strategy for sore throat management, promoting free rapid-response throat swabbing for high-risk groups, and exploring options for self-swabbing.
Northland has one of the highest rates of acute rheumatic fever in the country, and 95 per cent of cases are in Maori children aged 5-15.
The other authors were Kyle Eggleton and Clair Mills, Northland's former medical officer of health, now working with Doctors Without Borders in Paris.
The study included 18 adults, 14 children aged under 15, and four youths aged 16-24.