Data Protection Commission to contact Department of Health over dossiers on children with autism

The Data Protection Commission has said it is making contact with the Department of Health in relation to claims it secretly gathered information from private doctor consultations to create dossiers on children with autism involved in legal actions against the State.

The dossiers, which include the sensitive medical and educational information of children involved in long-dormant court cases, were built and maintained over a number of years by the Department of Health, without the knowledge or consent of parents, according to an RTÉ Investigates report, which is to be broadcast on PrimeTime on Thursday night.

The alleged practice has come to light following a disclosure by a whistleblower, Shane Corr, who works as a senior civil servant at the Department of Health. Detailed information is understood to have come directly from confidential consultations that the children and their families had with doctors and other professionals, who the department instructed not to tell parents.

The information was shared and gathered with the goal of aiding the Department of Health with a background legal strategy, such as in determining when it would be a good time to approach parents to settle or withdraw their case.

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A spokesman for the Data Protection Commission said on Thursday “we have become aware of the issue through media reporting this morning and are making contact with the Department today in relation to it”.

Charity reaction

Adam Harris, chief executive of AsIAm, an autism charity and advocacy organisation said it was "deeply concerned" by the issues due to be raised in PrimeTime.

“We know from experience that autistic children and their families are all too often denied their constitutional and statutory rights by Government,” he said.

“There is an urgent need for a change in culture and attitude in how the Department of Health, the HSE and the Department of Education interact with parents who are only seeking to vindicate their rights of their children,” he said.

Tanya Ward, chief executive of Children's Rights Alliance, said the Data Protection Commissioner should conduct an investigation into the matter.

“They need to look at the original reasons why the information is being gathered and whether any safeguards were put in place to maintain it. It seems to have been retained indefinitely on a searchable database, people would be very concerned about that kind of information,” she said.

Inclusion Ireland, the national association for people with an intellectual disability, said the details which have emerged are "a gross breach of trust" and called for the families affected to be notified.

Lorraine Dempsey, interim chief executive of the organisation said it is "highly disturbing to think that sensitive information is being collated in this manner – when families are at a low ebb and seeking help from the State, to be potentially weaponised later during legal disputes".

The special rapporteur on child protection Professor Conor O’Mahony said he was not entirely surprised by the revelations, but that they reflected a broader State approach to aggressively defending litigation, which needed to be addressed.

“There is an established pattern of the State going to very extreme lengths to defend cases,” he told RTÉs Six One News. “This particular set of revelations, I suppose in one sense, are maybe a little bit more extreme.”

There are “question marks” regarding whether the retention of material was in line with data protection law, he said, and expressed particular concern at the appropriateness of information being retained in cases that were not active before the courts.

“It’s simply not the right way to treat children and families who litigate against the State,” he said.

Department of Health

In a statement, the Department of Health said it was made aware of the RTÉ investigation last year and initiated an independent review of its practices.

On Thursday evening, the department moved to reassure parents, families and other interested parties that it “never unlawfully held sensitive medical and educational information of children involved in dormant court cases”.

In a statement issued just hours before the programme aired, it said it was conscious of the “impact that these headlines will have on affected families”.

It has undertaken to engage with stakeholders in the coming days to address any concerns.

“It is normal practice for defendants [of] litigation to gather and maintain appropriate information in order to obtain legal advice and/or defend the proceedings. This is necessary to protect the public interest and is a normal practice for the management of litigation,” it said.

After being made aware of the programme last year, the Department said it commissioned an unnamed senior counsel to carry out a review, which was completed in November and which identified no breaches of data protection law.

“The review found that information contained on relevant files managed by the Department is consistent with, and typical of, the sort of information which arises in such litigation. The examination also found no basis to suggest wrongdoing arising from the information contained,” it said.

The Department of Health did not respond to a request for a copy of its independent report on Thursday evening.

Health Service Executive

The HSE said it lawfully shares information with the Department of Health on a range of issues, including the provision of health services to children with special education needs.

“It is normal practice for defendants to litigation to share information, and we do so from time to time to assist in the management of certain High Court cases taken against the State,” it said in a statement it first released to RTÉ.

“Furthermore the HSE regularly provides anonymised information to the Department of Health regarding ongoing legal cases, specifically in relation to the Disability Act.”

The HSE told RTÉ that, in relation to the alleged breach of confidentiality, it was “unable thus far to identify incidents that fit the not very specific description given” by the broadcaster.

“We would not knowingly share personal information in breach of doctor/patient confidentiality or otherwise unlawfully, and we take our obligations in this regard very seriously,” it said, requesting the ability to respond to any specific allegation before the programme went to air.