This information sheet accompanies How to meet ethical standards when you gather outcomes information. It will help you think through some of the issues that affect these particular groups when you are collecting service data:

Children and young people

People in dependent or unequal relationships

People with cognitive impairment, an intellectual disability or a mental illness

People who may be involved in illegal activity

Aboriginal and Torres Strait Islander people

The information comes from the National Statement on Ethical Conduct in Human Research.

Children and young people

When getting data from children and young people, you must consider:

• Their capacity to understand why you are gathering information and the possible consequences for them;
• Whether the young person feels pressured by parents, peers, the people gathering the data or others to participate in the information gathering;
• Whether you should also seek consent from another person, such as a parent;
• Conflicting values and interests of parents and children.

Children and young people can give consent to participate in any data-gathering you are doing – but you must be confident of their capacity to make that decision, and that they are not vulnerable in ways that would mean you should get additional consent from a parent or guardian.

You need to make sure that children and young people can understand the questions you ask and any research tools you use (surveys or evaluation forms). You also need to explain why you are gathering the information and how it will be used - in a way they can understand.

You must be absolutely confident that collecting information from a child or young people is in no way damaging to their best interests.

People in dependent or unequal relationships

Often service data is collected by staff who have a professional relationship with the people they are collecting the information from. This can influence clients' decisions - they may want to please the worker, or perceive the worker to have more status, or that they have influence or authority over them. Other examples of unequal relationships are:

• Carers and the people they care for
• Service providers and refugees
• Employers and employees
• Service providers and vulnerable communities to whom the service is provided. 

One of the issues you will need to consider is whether participants may have an unrealistic expectation of the outcomes of giving you information, for example that giving feedback on service shortages will result in more resources being available. They may also be worried about suffering negative consequences from giving, or not giving, information. Confidentiality issues may be particularly important.

People with cognitive impairment, an intellectual disability or a mental illness

These are three different kinds of conditions but the ethical issues they raise around collecting data are very similar. Some of the issues to consider are:

• The capacity of someone to participate in your research process due to the nature of their condition, or their medication, or their discomfort or stress.
• When people with these conditions are asked to give consent to participate they might be more than usually vulnerable to various kinds of stress or influence.
• Where the condition is temporary or episodic, ensuring that you seek consent when the condition doesn’t interfere with their capacity to give consent.
• Getting direction from the client about what to do if their capacity to consent or participate varies or is lost while your data gathering is underway – and then following those directions, unless doing so is not in the client’s best interests.

And, of course, it is essential to respect refusal or reluctance to participate in your data-gathering.

People who may be involved in illegal activities

When you gather client information you may learn about illegal activity (including notifiable activity) by the people you are interviewing or others. This could raise issues for you about what you are obliged to disclose or the vulnerability of participants.

If you think you are going to learn about illegal activity you should explain your legal obligations should disclosure occur, and the extent to which you will keep information about illegal activity confidential.

Aboriginal and Torres Strait Islander people

The National Statement on Ethical Conduct in Human Research provides specific advice on how to conduct research with Aboriginal and Torres Strait Islander Peoples. While this information sheet is about gathering information from people using services for reporting and evaluation purposes, some of the guidelines on how to collect information from Aboriginal and Torres Strait Islander people are relevant and are also applicable widely. They are:

• Ensure your methods are respectful;
• Consult participants about how you will collect and report on the information;
• Provide opportunities to develop trust and a sense of partnership in the information gathering process; and
• Ensure the participants have been consulted as to what the benefits of gathering the information will be.