The Ministry of Health manages the national population health surveys, and contracts specialist survey companies to interview people on their behalf.
If you believe that any of these principles have not been adhered to, or you have concerns about participating in a national population health survey run by the Ministry of Health, please email [email protected].
Overview for participants
High participation rates are critical to the success of the Ministry of Health’s population surveys. While some respondents welcome the opportunity to participate, or recognise the importance of providing data, others perceive surveys to be an intrusion. Carefully designed methodology and processes are employed to ensure that the load placed on respondents is minimised, while maximising participation.
The New Zealand Health Monitor (NZHM) surveys operate under strict ethical standards and are subject to the approval of research ethics committees, where appropriate.
The main principles adhered to by the NZHM are:
- respect for persons
- informed consent
- privacy and confidentiality
- minimisation of harm
- cultural and social responsibility.
Respect for persons involves recognition of the personal dignity, beliefs (including cultural and religious beliefs), privacy and autonomy of individuals. Individuals have the right to decide whether or not they wish to participate in the NZHM, and they need not give reasons for refusing to participate. Individuals have the right to withdraw from the research at any time.
Field researchers involved in NZHM surveys (both telephone and face-to-face surveys) carry identification with them, including a reference telephone number, so that participants can call to establish the field worker’s legitimacy if they wish.
Informed consent consists of three basic components:
- adequate information is provided to enable an informed judgement to be made
- information provided is in a form and manner that will enable it to be understood by each individual
- the consent is voluntary (participation free from manipulation, coercion, inducement or any other undue influence).
The Ministry of Health requires that the survey provider attempt to match the language, ethnicity and gender of an eligible respondent with corresponding characteristics of the survey interviewer, when requested. Where appropriate, interpreters are available for potential participants whose first language is not English, and translations of the consent forms may be supplied.
The consent of the primary caregiver is obtained when interviewing people under the age of 15 years. If the interviewer has any concerns about the maturity or ability of a 15-year-old to participate in NZHM surveys, then the primary caregiver’s informed consent is requested in addition to the 15-year-old’s consent.
Additional consent is always obtained for the collection and analysis of blood and any other bodily substance, and samples are not used for purposes other than those for which consent was originally given – see the section on Cultural and social responsibility below for more information on blood samples.
Privacy and confidentiality
Any information collected in the NZHM surveys that could be used to identify individuals is treated as confidential. Interviewers sign a confidentiality agreement before survey work begins, stating that they are prohibited by law from disclosing any information to anyone except authorised staff, and that they agree to abide by the Assurance of Confidentiality.
The names and addresses of people and households collected in the surveys are not stored with the responses. No information is released that would enable an individual or a household to be identified.
Unit record data are stored in a secure area and are accessible on a restricted ‘need to know’ basis only. All applications by academics or researchers to access unit record files are assessed according to predefined criteria. If successful, applicants are required to sign an agreement to ensure no breach of confidentiality occurs in regard to the storage of, access to and use of the data and their outputs. Generally, only confidentialised unit record files are released.
Record linkage, even if based on anonymous probabilistic matching, raises privacy concerns. The Ministry of Health works through privacy issues with the Privacy Commissioner and with key Maori representatives (such as kaitiaki groups).
Minimisation of harm
The Ministry of Health attempts to minimise the risk of harm for all participants in the NZHM. The safety of participants is of utmost concern, and so only appropriately qualified staff are employed, and they are given detailed training and adequate supervision.
The results of any testing of blood or urine samples are returned to the participants with an explanatory letter as soon as possible after collection and analysis. When potential health problems are discovered through testing in the NZHM, the participant or caregiver is advised to see a general practitioner and, if necessary, is assisted to do so.
NZHM surveys include the smallest number of participants and the smallest number of tests on these participants needed to ensure scientifically valid estimates. Unavoidable risks, such as inconvenience and discomfort to the participant, are always balanced against the possible benefits to the participants from their involvement.
Minimisation of harm to Maori research participants is enhanced by the inclusion of Maori as partners and advisors in the design, implementation, management and analysis of NZHM surveys. Representatives of other groups, such as Pacific and Asian peoples, consumers of mental health services, etc, are also routinely invited to work with The Ministry of Health to minimise the chance of harm to specific participants of the NZHM surveys.
Cultural and social responsibility
New Zealand’s cultural diversity results in a range of views on the relative weight of individual and collective values. The NZHM attempts to not only be sensitive to individual research participant’s rights and interests, but also respect the social and cultural sensitivity of each particular population group in New Zealand. Where NZHM research may have an impact on a specific community or population group, we consult with those groups likely to be affected and make every attempt to accommodate their recommendations, where possible.
An example of this is the consultation conducted by the Ministry of Health with laboratory specialists, Maori and Pacific groups in 2003 on the topic of blood samples. This consultation has led to the following protocols being adopted regarding the collection of biological samples in the health examination component of NZHM surveys.