Incensed and inspired by someone else’s ongoing dealings with the Ombudsman we thought we could share our experiences. An NZDSOS member wrote to Health New Zealand (HNZ) to ask for the data from the Post Vaccine Symptom Check (PVSC) survey. Only a portion of the data was provided so a further request was made to ask for all the data. After a delay of two months Health NZ declined again to release the data so a complaint was made to the Ombudsman.
Below is the timeline of events and at the end, the original request and the letter of complaint to the Ombudsman. A response from the Ombudsman is still anticipated.
26 November 2022
Request made asking for information about PVSC including any text in the free text boxes as the information in tick boxes was only about expected ‘minor’ symptoms such as headache, sore arm, fever… Member wanted to know if people had written heart attack, stroke, encephalitis, stillbirth, blood clots, sudden death etc in free text box as there was nowhere else to put such information.
30 January 2023
Just over 2 months later a response was received, some information about the survey was provided but not what had been written in the free text boxes.
31 January 2023
Reply to Health NZ asking for the free text information again with explanation why it should be released.
2 March 2023
Health NZ asked for more time to consider request.
30 March 2023
Further email saying HNZ declined to release the information (which they could have said 2 months earlier on 31 January).
30 March 2023
Complaint to Ombudsman via online form.
4 April 2023
Acknowledgement of complaint by Office of Ombudsman and allocation of a reference number 605471.
4 May 2023
Email to Ombudsman asking for more information about expected timing for reply.
4 May 2023
Automatic reply from Ombudsman saying request received.
10 May 2023
Phone call to Ombudsman’s office, 0800 802 602, asking about complaint 605471. Has not been allocated to a team yet.
Rang Ombudsman’s Office 0800 802 602 to check where complaint at as now three months since received by Ombudsman. Not been allocated to an investigator. “I’m sorry we don’t provide time frames.”
22 September 2023
Rang Ombudsman’s Office to ask how complaint is going. In a queue awaiting allocation to an investigator. Office has no time frame, no targets, not willing to engage in any discussion about how long it is likely to take. Advised to email again to the info@ email address if complaint is urgent. Depends on complexity of case and capacity of office to respond.
22 September 2023
Email to Office of Ombudsman for update.
25 September 2023
Reply stating awaiting allocation to an Investigator in the Investigations and Resolution team.
26 October 2023
Update from Office of Ombudsman stating complaint is now with the Investigation and Resolution team and will be allocated to an Investigator as capacity allows. So, no change from month prior.
What was the information request you originally made?
26 Nov 2022
Last year Medsafe undertook monitoring of the Pfizer injection via two surveys called Post Vaccine Symptom Check between Aug and Oct 2021 and then from 14 Dec 2021.
Please can you provide a copy of the text that people were sent.
Please can you provide a copy of the survey(s) that people who responded ‘Yes’ to a post vaccine symptom check (PVSC) text were asked to fill out. If the initial one and the post booster one were different, please provide a copy of both.
Please can you provide the information that was in any free text boxes that participants could fill out.
Please can you provide detailed information about what events were reported. I have looked at the information on this page https://www.medsafe.govt.nz/COVID-19/active-monitoring.asp and would like more detailed information about what other symptoms or medical conditions people experienced following their injections.
Please provide the information in an accessible searchable format.
If any part of my request is unclear, please don’t hesitate to contact me.
If any of the information that I have requested is unavailable or would be difficult to retrieve, but similar information might be readily available, I would be happy to discuss altering or refining my request.
As a New Zealand citizen, I am eligible to make requests under the OIA.”
The Repeat Request
31 Jan 2023
“Hello Ministerial Services,
Thank you for this reply. I am concerned that part of the information I requested (Please can you provide the information that was in any free text boxes that participants could fill out.) has been refused as per this paragraph: “As you will note from the document released to you, the survey explicitly stated that the information provided was confidential. I am therefore refusing this part of your request under section 9(2)(ba)(i) of the Act, on the basis that the information is subject to an obligation of confidence, and releasing it would prejudice the supply of similar information in the future. It is in the public interest that survey participants continue to give fulsome responses in free text fields.”
When looking at the Privacy Act and the website of the Privacy Commissioner it states that anonymised information can be shared.
I omitted to state that I did not want any personal or identifying data but I would like just the text comments that survey participants wrote.
Please can you provide this information (any free text written by participants in any boxes including the “Other” or “Please describe below” boxes) in an anonymised and de-identified format.
30 Mar 2023
Why are you concerned?
“I am concerned about the unwillingness of Health New Zealand (HNZ) to release anonymised information from the PVSC (Post Vaccine Symptom Check) survey that New Zealand citizens have contributed to.
I requested information on 26 Nov 2022 and specifically asked for comments written in any free text boxes. On 30 Jan 2023 I was provided with basic information about the structure of the survey and where to read the results. I had not specified that I was requesting anonymous data, as I assumed this was a given. I certainly did not, and do not, expect to get information that allows an individual to be identified.
The free text data I had requested was withheld on the basis of privacy and confidentiality, but when I reviewed the Privacy Act this did not seem to apply.
As I was unsatisfied that anonymised data had been withheld, I wrote back to Health NZ on 31 Jan 2023 and asked again for the ‘free text’ information as it did not appear to me to be covered by the Privacy Act.
At the end of the allotted time to reply to an OIA, a time extension was requested on 2 Mar 2023 and now Health NZ has waited until the end of that time extension to tell me that they are not going to release the information on the basis of privacy and confidentiality. They could presumably have told me that on 31 Jan 2023 rather than wasting 2 months of my time.
This seems to be a deliberate attempt to obfuscate and irritate and without any basis. As stated below from the Privacy website: “If someone cannot be identified from the information, it is deemed anonymised information and not covered by the Code.”
With regards to 9(2)(ba)(i) of the OIA “…would be likely to prejudice the supply of similar information, or information from the same source, and it is in the public interest that such information should continue to be supplied;” I think the citizens of New Zealand who have responded to this survey, expect the results to be shared for the benefit of all New Zealanders. I think they provided the information on the understanding that the results would be presented to their fellow citizens for the betterment of collective health, rather than kept hidden away in some institution.
The information that has been provided to me about the questions that were asked in the survey, and the results that have been made public on the Medsafe website, is useful but it doesn’t tell the whole story. New Zealanders provided that information believing the whole survey results would be published or made public not just selected tick box information.
It is my opinion that by withholding this information HNZ, rather than prejudicing the supply of future information, is doing a disservice to New Zealanders by preventing them from knowing what medical events (such as myocarditis, shingles, Guillain Barre syndrome, strokes, heart attacks, stillbirths, sudden death) people experienced post vaccine.
The public will be LESS likely to share their data in the future if their responses are not made available. They may wonder what the point of the survey was if no results are forthcoming.
I would like you to ensure that HNZ provides the data that I have requested.”