Nexus Research Group - Breaches of the Privacy Act - Ministry of Health accessing school roll data without consent

Ministry of Health and Schools breach Privacy Act

by Scientist / Teacher Michael Fenton

(Microsoft Innovative Teacher, Ministry of Education eLearning Fellow, Medical Microbiologist)

Public interest

This article reamains for two reasons

For historical purposes
To show that parents and students have particular rights that can be easily eroded.

First, the good news...the head of the programme contacted me directly and confirmed that improvements to the process needed to be made as a consequence of receiving this article.

Unfortunately, the school I raised my concerns with as a parent did not respond.

A letter in the post...not very helpful...

I received a letter from the local District Health Board Public Nurse about the New Zealand Gardasil Human Papilloma Virus (HPV) Immunisation programme.

The name of the Public Nurse was NOT stated
Another person had scribbled an illegible signature.
The invitation to contact the Public Nurse if I had any queries 'on the number below' was unhelpful since the phone number was omitted.

I had to phone the general number for the Health Board and finally got put on to an administrator who said that the Health Board would have accessed our daughters school roll data to get information such as postal address, etc.

Its not the first time concerns have been raised...

Media articles raising public awareness of this problem seem to have gone unnoticed by various District Health Boards. The Manawatu Standard published an item by JANINE RANKIN. An excerpt is below...

"The Privacy Commission will investigate how schools released schoolgirls' contact details as part of the HPV (human papilloma virus) vaccination programme.

The programme's planned to continue next year to reach another three year groups, and in future will be routine for Year 8s.

Assistant privacy commissioner Katrine Evans said getting the process right for the future is important.

"Letting parents and students know exactly what will happen with their information is vital.

"If people lose confidence that their information will be properly handled, they're less likely to participate in this very important public health programme."

Mrs Evans said the commission wanted to find out exactly what happened with the release of school roll data, and why there appeared to be such a variety of approaches taken by schools.

Schools that decided to provide contact information directly from their rolls to the school-based vaccination system, to enable follow-up when vaccination consent forms weren't returned, would be under particular scrutiny.

The commission advised that information release was OK to support a public health issue of considerable importance so long as parents knew about it in advance."

Ministry timeline comes at the expense of student and parent privacy?

According to one article, the MidCentral Health made a formal request for roll information in the last week of January, with a request it be provided by February 13. I have checked our school newsletter for December 2008 and January/February 2009 and there is no mention of private information being passed on to another organisation.

In spite of the media publicity such as the example above, staff I talked to via our local District Health Board were unaware of the controversy surrounding the issues of consent. I was told that I should take the matter up with the school BOT. While I intend to do so, it is my opinion that this is just 'passing the buck'.

The Ministry of Education advice was unambiguous that parents had to be informed before school roll data was shared with the Ministry of Health; see Ministry of Education update to Principals and Boards 14 October 2008

Why is this so important?

Too often in my experience I have seen 'policy' and 'procedure' used as excuses for what was poor management. Was the HPV programme rushed? This might also explain the errors in the DVD and the current confusion as to what protection parents and families have from a 'Big Brother' approach to private information. It does not take a big leap of the imagination to forsee that legislation can be used to force medical procedures on citizens. While I am not saying this is likely now, it is the blind unquestioning following of 'rules' that can lead an apathetic society to such a nightmare.

It is important and appropriate for academics to question the motives and authority of governing organisations to maintain the public trust and avoid repeating past mistakes that cause confusion or distract from the more important issues.

I would say that the intent of the HPV programme was to provide a medical treatment for those that could benefit the most. These other matters distract from that intent.

In Conclusion

1. I do not accept that a group of parents making up the school Board of Trustees has the right to pass on private and confidential information about children of other parents in the school community. While many or all on the BOT may think the HPV programme is useful, other parents may have credible and justifed science-based reasons for not wanting to take up the vaccination offer. Others may have cultural or religious reasons. Boards that assume 'they know best' in this instance could be seen as condescending and arrogant.

2. Schools do not have to pass on information just because an 'official' body, government or otherwise, requests it. In 'Private Word'- Issue 70 and other articles Privacy Commission advice had been clear that before school roll data could be shared, school communities should be notified, and parents and girls given the opportunity to opt out. This is further supported by the Ministry of Education / Ministry of Health update to Principals and Boards 14 October 2008

3. I do not believe that coercion or bullying was the intent of sending out follow up letters. In my experience of management and bureaucracy, and the way various Ministry departments operate, I would suggest that this is simply another case of rushing to get a job done without a common and clear understanding by all parties of the requirements that had to be met first. Some 'boxes were ticked off', but it seems the issue of gaining proper consent to collect data was glossed over.

4. As an aside, there is a big difference in the process of being vaccinated, which is what ALL 'jabs' or 'shots' involve, and the process of becoming immunised. The apparent on-going and deliberate use of the word 'immunise' is leading because it suggests that the shot will work 100% of the time in 100% of individuals, and those that do not get the shot are at risk and unimmunised. In New Zealand we do not test individuals prior to vaccination to see if they already possess immunity. Also we do not bother testing if individuals that are vaccinated develop useful immunity. Arguments about the costs of testing are irrelevant and red herrings to distract from focusing on the real issue...that there appears a trend to dumb science down or twist science concepts to suit particular agendas.

5. Thanks to Rayoni Keith from the MoH for a useful discussion about planned improvements to the next phase of the HPV programme in schools.

Ministry of Health and Schools breach Privacy Act

Public interest

A letter in the post...not very helpful...

Its not the first time concerns have been raised...

Ministry timeline comes at the expense of student and parent privacy?

If you have concerns that your privacy was breached: