16 August 2011

Open Dore

Yesterday I noted reports that the Victorian Health Services Commissioner was investigating claims that medical records had been abandoned by their creators and were thus publicly accessible.

The bad news continues. Today's Herald Sun features photos of files strewn across the floor of the office. There is a wider selection of snaps at the delightfully named Kitten Of Doom site. (Cats are good for something)

The paper reports that -
Thousands of children's medical files from a controversial treatment program for hyperactivity and dyslexia have been left strewn throughout an abandoned clinic in Melbourne's inner east for the past three years.

The files -which include names, dates of birth, home addresses and medication details - were left inside the Dore clinic in the affluent suburb of Hawthorn when the British-based parent company went into voluntary administration in 2008.

Since then, squatters and vandals have trashed the building, allowing anyone to walk in the back door and access the archives ....

The mother of a then 11-year-old boy in the Dore program, who lost her upfront payment of almost $5000 when the clinic shut, and who wished to remain anonymous, said yesterday she was shocked her son's records were available for anyone to see.

"As parents, we don't know how much information is taken," she told The Australian. "(When the clinic closed) there was no contact, no effort, nothing."

Victorian Health Services Commissioner Beth Wilson said she was "horrified" to learn that sensitive documents had been unsecured for three years. ...

Ms Wilson said she would investigate the apparent breach. In the meantime, she would ensure the administrator placed patient files in safekeeping until all issues surrounding their ownership and privacy were settled.

Administrator Giles Woodgate could not explain why the records were not removed from the clinic and stored securely when the company dissolved in 2008
The Australian comments that -
The Dore program, started by British millionaire Wynford Dore, claimed to cure hyperactivity and dyslexia through eye and balancing exercises and attracted scepticism from the medical profession.

Many borrowed the money to pay the fees from the finance company Dore promoted.

The company went into voluntary administration in 2008 after owing about $13 million to creditors and shut its clinics around the world, including 13 in Australia.
The same paper subsequently reported that -
Children's medical records left unsecured in an abandoned clinic for three years were yesterday seized by Victoria's Health Services Commissioner, who vowed to investigate the serious breach of privacy.

As Victorian Department of Health officials and members of the police privacy unit looked on, Health Services Commissioner Beth Wilson removed all patient information from a former Dore clinic in the inner Melbourne suburb of Hawthorn. While some files were still in boxes, many had been pulled out and scattered throughout the building, which has been vacant since 2008.

The files will be stored securely while Ms Wilson investigates whether the state's Health Records Act has been breached. ..."My initial reaction was to get the records into a secure site," she said. "Whoever held the records is responsible for their storage under the Act."

Department of Health spokesman Graeme Walker said seized medical records would be stored in the department's archives.
The Dore Program has been controversial. 'Curing dyslexia and attention-deficit hyperactivity disorder by training motor co-ordination: Miracle or myth?' by Dorothy Bishop in 43(10) Journal of Paediatrics & Child Health (2007) 653–655 modestly commented that
Dore Achievement Centres are springing up world-wide with a mission to cure cerebellar developmental delay, thought to be the cause of dyslexia, attention-deficit hyperactivity disorder, dyspraxia and Asperger’s syndrome. Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development.

Unfortunately, the published studies are seriously flawed. On measures where control data are available, there is no credible evidence of significant gains in literacy associated with this intervention. There are no published studies on efficacy with the clinical groups for whom the programme is advocated. It is important that family practitioners and paediatricians are aware that the claims made for this expensive treatment are misleading.
• The treatment offered by Dore Achievement Centres is being promoted as a "drug free" alternative to conventional treatment for ADHD, and as a 'miracle cure' for dyslexia. It is presented as having a neurological rationale and gains credibility by appearing to be medical treatment.
• The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.
• The research purporting to show efficacy of the treatment does not show sustained gains in literacy scores in treated vs. control children. Furthermore, the intervention has not been evaluated on the clinical groups for which it is recommended.
The UK Advertising Standards Authority prohibited repetition of Dore advertisements in Britain.