Table 1 High and low descriptors and psychometric properties of HLQ scales

People who are low on this domain are unable to engage with doctors and other healthcare providers. They don’t have a regular healthcare provider and/or have difficulty trusting healthcare providers as a source of information and/or advice.

Has an established relationship with at least one healthcare provider who knows them well and who they trust to provide useful advice and information and to assist them to understand information and make decisions about their health.

Feels that there are many gaps in their knowledge and that they don't have the information they need to live with and manage their health concerns.

Feels confident that they have all the information that they need to live with and manage their condition and to make decisions.

People with low levels don’t see their health as their responsibility, they are not engaged in their healthcare and regard healthcare as something that is done to them.

Recognise the importance and are able to take responsibility for their own health. They proactively engage in their own care and make their own decisions about their health. They make health a priority.

Completely alone and unsupported for health.

A person’s social system provides them with all the support they want or need for health.

No matter how hard they try, they cannot understand most health information and get confused when there is conflicting information.

Able to identify good information and reliable sources of information. They can resolve conflicting information by themselves or with help from others.

Are passive in their approach to healthcare, inactive i.e., they do not proactively seek or clarify information and advice and/or service options. They accept information without question. Unable to ask questions to get information or to clarify what they do not understand. They accept what is offered without seeking to ensure that it meets their needs. Feel unable to share concerns. The do not have a sense of agency in interactions with providers.

Is proactive about their health and feels in control in relationships with healthcare providers. Is able to seek advice from additional healthcare providers when necessary. They keep going until they get what they want. Empowered.

Unable to advocate on their own behalf and unable to find someone who can help them use the healthcare system to address their health needs. Do not look beyond obvious resources and have a limited understanding of what is available and what they are entitled to.

Able to find out about services and supports so they get all their needs met. Able to advocate on their own behalf at the system and service level.

Cannot access health information when required. Is dependent on others to offer information.

Is an 'information explorer'. Actively uses a diverse range of sources to find information and is up to date.

Has problems understanding any written health information or instructions about treatments or medications. Unable to read or write well enough to complete medical forms.

Is able to understand all written information (including numerical information) in relation to their health and able to write appropriately on forms where required.