The Department of Health has been secretly using information from private doctor consultations to build and maintain dossiers on children with autism who were involved in legal actions against the State, RTÉ Investigates has learned.

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.

The work was done with the cooperation of the Health Service Executive and the Department of Education, and involves detailed information sourced directly from confidential consultations that the children and their families had with doctors and other professionals.

The reports include details of specialist service provision and document the well-being and mindset of parents as they cope with the needs of their child.

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RTÉ Investigates: The Department, The Data & The Disclosure

Families were unaware that what they disclosed to medical staff in order to get treatment and support for their child was being passed on to the department.

In one instance, evidence suggests that a detailed report was sent to the department following a psychiatric consultation with a child.

Another case involved the sharing of a video of a child in a distressed state. There were also updates from local care, community mental health and support services.

These updates record issues related to children named in the court proceedings, as well as their parents and siblings. They also record details such as marital breakdowns among parents and addictions in the home.

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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.

Read more:
Why secret dossiers are breach of trust for parents

There has been no active litigation in these cases, nor any indication that proceedings were likely to be reactivated.

Template letters circulated to health and education services, and seen by RTÉ Investigates, describe the cases as "historic" and "dormant".

The letters also detail the emphasis the department placed on keeping the families ignorant of its information gathering.

"This is not a request to contact any of the plaintiffs involved in the litigation or their families or legal advisors. Indeed we would request you not do so in connection with this request," one template letter said.

The files include medical and social care reports and involve original documents, images and video files.

In instances where the Department of Education was listed as a co-defendant, annual school reports from class teachers were supplied in their original form to the Department of Health.

All the information has been collated and stored in a dedicated database that is accessible and searchable within a division of the Department of Health.

The dossiers were amassed on the explicit condition that the children, their families or their solicitors were not told.

The dossiers include the sensitive medical and educational information of children

The cases are known to involve a cohort of legal actions, initiated more than a decade ago, seeking the provision of education for children with autism.

However, in a statement, the Department of Health said the information sharing discovered by RTÉ Investigates with respect to the special education needs proceedings was "normal practice" in circumstances where different State bodies shared information when they were involved in litigation together.

It said it had commissioned an expert senior counsel to review the practice and that nothing arising from that review caused it to change its approach.

The department said that, under data protection legislation, it was entitled to share and store information for the purposes of getting legal advice or to defend court proceedings.

In the cases reviewed by RTÉ Investigates, there was no indication from the families or their solicitors that proceedings were likely to be reactivated when background updates were sought directly from medical professionals.

Daragh O'Brien, a data protection expert and managing director of Castlebridge Consulting, said this caveat still required transparency with the people involved.

He said that, by not informing families of the information gathering, there appeared to be a breach of domestic and EU law, as well as their fundamental rights.

"The problem here is that therapeutic process is grounded on the principle of trust and confidentiality, which means, when we get into that process, there needs to be transparency about what is going to happen," Mr O'Brien told RTÉ Investigates.

"There has been a transparency principle under EU law and in data protection laws since the 1980s," he said.

"Not only is it in GDPR, not only is it in the data protection act of 2018, it is also in the charter of fundamental rights and in the treaty of the formation of the European Union. That there is a requirement for transparency in the processing of data. It must be processed fairly, lawfully and transparently."

However, in a supplementary statement, the Department of Health said that, "where the State is a defendant or notice party to litigation, and where the case has not been formally concluded ... the relevant State parties must defend those proceedings and that requires the relevant State parties to continue to oversee, manage and review them from time to time."

"Any such management and review necessarily involves the assessing of information relevant to the claims. This is necessary to protect the public interest and is a normal practice for the management of litigation," it said.

The statement added that "this sharing of information is specifically permitted by data protection law, and their independent expert found that the kind of information on the files is typical of the sort of information that arises in litigation".

Protected disclosure

The practice has come to light following a disclosure by a whistleblower who works at the Department of Health.

This person made a protected disclosure to his superiors in 2020 and subsequently told RTÉ Investigates about the practice.

An interview with the whistleblower will be broadcast on Prime Time at 9.35pm tonight on RTÉ One and RTÉ Player.

The files kept on the children were detailed, extensive and involved material sourced directly from consultations with psychiatrists and other medical professionals, the whistleblower said.

The material was kept on Department of Health electronic filing systems and summarised on running spreadsheets.

The spreadsheets and the original files could be accessed, searched and viewed by anybody working in the Department’s Social Care division, which deals with the likes of older people, social care and disability policies.

In a statement to RTÉ Investigates, the department said that, whenever a civil servant discloses information without authorisation, both that person and the party that receives it could be guilty of an offence under the Official Secrets Act.

The person who made the protected disclosure has been reminded about his conduct and his duty as a civil servant to respect confidential matters.

The cases

The practice revealed by the protected disclosure is known to have affected at least four dozen families who had initiated High Court proceedings in the early to mid-2000s, seeking appropriate and worthwhile education and support services for their child with autism.

This would have happened at a time when several high-profile cases had been taken by parents of children with autism to assert their rights to education and places in schools.

Rulings at the time forced the governments of the day to improve the nature and availability of educational services for children with autism.

The cases were taken in the name of the child and typically listed the Minister for Health, the Minister for Education and the Health Service Executive and health boards as the defendants.

Between 1996 and 2016, more than 120 cases were settled at a cost of €11.2m to the State.

In more than 40 cases, services were provided once the court case was initiated and the cases were not reactivated.

One of the outstanding issues was that, in order to prepare to file papers in court, the families had incurred significant legal costs and would be liable for instruction fees due to their solicitors for preparing the case.

If the cases were settled, the costs would typically be split between the Department of Health and the Department of Education.

However, if the families could be encouraged to withdraw the cases, they could carry their own historic legal costs.

Court records reviewed by RTÉ Investigates indicate there has been little or no filings or hearings in any of the cases at issue and the cases have been dormant for more than ten years.

The practice has come to light following a disclosure by a whistleblower

Catherine Ghent, a solicitor specialising in children’s rights, said the cases would have been dormant as far as the families were concerned and the Department of Health should not have continued to work on them in this way without their knowledge.

"Were a case to be dormant, it should be dormant, but what the plaintiffs didn’t understand and were not informed of was the other side continued to effectively work on the case in terms of gathering information," she said.

They did that "in a deliberately surreptitious way", she said, pointing to the fact that the Department of Health specifically told clinicians not to tell families that the information sharing was happening.

"And that to my mind is a serious ethical breach," Ms Ghent told RTÉ Investigates.

In its statement, the department said that the independent expert senior counsel who reviewed the practice had found it to be "entirely lawful, proper and appropriate".

It also said that "the report did not make any recommendations which required the department to change its approach."

In a statement, the Department of Education said the "joint strategy … constitutes best practice in line with ensuring that State resources are appropriately managed in an efficient and cost-effective manner".

It also said that it was "normal practice in litigation for co-defendants to co-operate and share information between themselves where there is a common interest and such sharing is required for defending such litigation".

The HSE said it was not aware of any of the specific cases, but that it does "lawfully share information with the Department of Health on a range of issues, including the provision of health services to children with special education needs" and to assist certain court cases.

But it said it 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".

Watch RTÉ Investigates: The Department, The Data & The Disclosure on RTÉ Player.