Dr George Laking
Health Research
Me whai wāhi atu au i tēnei rangahau?
Should I take part in this research?
Kaiwhakatuhituhi:
This article was written by Dr George Laking (Te Whakatōhea), who is a Medical Oncologist at Auckland DHB and is involved in research against cancer.
Nga mihi nui ki a ia.
There are many unknowns in health. Much of the time it’s clear what the problems are and what needs doing, but not always. To change the way we do things often depends on research that shows what the problem is and how to fix it.
For example, the careful work of Te Rōpū Rangahau Hauora ā Eru Pōmare has shown up the inequalities in health of NZ Māori and non-Māori. This has spurred many people into work in Māori health. It has also been a useful way to remind the Treaty partner of its obligations.
Sooner or later, most people who use health services will come in contact with clinical research. This can take two main forms: observational (or descriptive) and interventional (or experimental).
The aim of observational research is to find out what happens in reality in our health system. Who are the people? What are their needs? What are we doing about it?
The aim of interventional research is to find out what works best for our health system. Which treatment is better? Which test is better? Which service works best?
An important point is that the answers to these questions are not always the same for Māori as for non-Māori. That is one reason why Māori need to take part in Health Research. In fact to ensure that Māori answers are not drowned out or overlooked, on average Māori probably need to be more involved in research than non-Māori.
Kaupapa Māori Research
Another point is that to get the best answers from Māori (best in the sense of most useful for their and their whānau’s health), research needs to ask the right questions. That is why Māori also need to be involved in design of research.
Professor Linda Tuhiwai Te Rina Smith (Ngāti Awa,Ngāti Porou) set out some of the main issues for research affecting Māori:
▪ What research do we want to carry out?
▪ Who is that research for?
▪ What difference will it make?
▪ Who will carry out this research?
▪ How do we want the research to be done?
▪ How will we know it is a worthwhile piece of research?
▪ Who will own the research?
▪ Who will benefit?
Rangahau kaupapa Māori, the kaupapa Māori research movement, offers a well thought out way of doing research that addresses these issues in accord with tikanga. Most public-sector health research in New Zealand is funded by Te Kaunihera Rangahau Hauora o Aotearoa (HRC, the Health Research Council). Te Kaunihera supports a “by Māori for Māori” kaupapa and “aims to build Māori capacity and capability to undertake health research, to prioritise the development of Māori science, paradigms and methodologies and to ensure Kaupapa Māori focused research is supported.”
Research Ethics
Everyone involved in research agrees it must not conflict with people’s rights in health care, such as dignity, privacy, and a high standard of treatment. In other words, research has to be ethical. New Zealand does not have a law as such about health research ethics. However the Minister of Health has used section 11 of the New Zealand Public Health and Disability Act 2000 to set up a system of Health and Disability Ethics Committees. Any research that takes place in New Zealand has to be reviewed by one of these committees.
The Health and Disability Ethics Committees have published an Operational Standard that includes guidelines for research involving Māori. It says the first question committees should ask is whether “mechanisms [are] in place to ensure that Māori are involved as research participants in ways that do not undermine their cultural integrity?” An example of such a mechanism is the Māori Research Review Committee at Auckland DHB, which checks every research proposal that the DHB receives.
At the moment, the different DHBs each have their own approach to Māori consultation in research. The body with national oversight of research ethics is Te Kāhui Matatika o te Motu (The National Ethics Advisory Committee, NEAC). Te Kāhui has published guidelines on ethics for observational and interventional studies. It is now working on a Māori framework for ethical review of research.
Randomised Controlled Trials
Sooner or later, everyone who uses the health service will come in contact with a randomised controlled trial (RCT). RCTs are the most trusted form of interventional research. In the simplest form, they are used when we need to find out which of two treatments is better. To take part in a RCT, a person has to be willing to receive either treatment. The actual one they get is decided at random (similar to Lotto or rolling dice).
The reason for making it random is to give each treatment a fair chance of coming out in front. What could happen otherwise is that healthier or stronger people might be more likely to receive the new treatment. This would “stack the odds” in favour of the new treatment, which would make it hard to say if it really was any better than the old one.
It is important for every New Zealander to know about randomised trials, because the times when people are asked if they will take part are often quite difficult ones in their life (e.g., soon after a diagnosis of cancer (Glossary description: Cancer is a class of diseases in which a group of cells display uncontrolled growth (division beyond the normal limits), invasion (intrusion on and destruction of adjacent tissues), and sometimes metastasis (spread to other locations in the body via lymph or blood).), or in the Emergency Department after an accident, or at the Childrens’ Hospital).
At these times people often need their whānau more than ever to help them make a choice.