Broadly speaking, health and disability research should:
- aim to answer a question or solve a problem and therefore generate new knowledge to prevent, identify and treat illness and disease
- have the ultimate purpose of maintaining and improving people’s health – in the sense of a state of physical, mental and spiritual wellbeing, rather than simply the absence of disease or infirmity
- support disabled people to be included, participate more, exercise choice and control, and be more independent
- address health and disability disparities
- contribute to whānau ora.
This description is necessarily broad; we acknowledge that people’s health is influenced by a much wider range of social factors than their health care.
Speaking more specifically, health and disability research is any social science; kaupapa Māori methodology; or biomedical, behavioural or epidemiological activity that involves systematically collecting or analysing data to generate new knowledge, in which a human being is exposed to manipulation, intervention, observation or other interaction with researchers either directly or by changing their environment, or that involves collecting, preparing or using biological material or medical or other data to generate new knowledge about health and disability.
The following activities are not defined as ‘research’ and are not covered by these Standards.
- Public health investigations: these explore possible risks to public health, are often immediate or urgent and are often required by legislation. Examples are investigations into outbreaks or clusters of disease, analyses of vaccine safety and effectiveness, and contact tracing of communicable conditions[2].
- Routine public health activities: these include the use of identifiable data to support delivery of health services, the development of live National Health Index (NHI)-linked data as clinically actionable alerts to responsible clinicians, and the regularly investigation, assessment and monitoring of the health status of our resident populations.
- Public health surveillance: this involves monitoring risks to health by methods that include systematically collecting, analysing and communicating information about disease rates.
- Pharmacovigilance (post-marketing surveillance): this involves monitoring the adverse effects of pharmaceuticals after their introduction into the general population. Its methods include spontaneously reporting adverse events, and monitoring all adverse events for a restricted group of medicines (prescription event monitoring). Pharmacovigilance is distinguished from phase IV research, whereby sponsors or researchers conduct clinical research to assess or compare treatments (New Zealand Medicines and Medical Devices Safety Authority 2015).
