©FIND/Shivram Manthena

Language matters

Language choices and terminology can impact health-seeking behaviour.

Thoughtful language can challenge stereotypes, help address perceptions of power, and open doors to discussion.

Language around diagnostic testing holds particular challenges. It is inaccurate to describe someone being tested as a “patient” until they have received a positive diagnosis and entered the care system. Prior to a diagnosis, it is not uncommon for people to be referred to as “suspects”.

We are taking a conscious approach to terminology around diagnostic testing, to help remove barriers, and enable and encourage access to care. In 2023, we launched a project to work with communities and interested individuals to create a short, open-access language guide to encourage more thoughtful and accurate communication around diagnostic testing.

This guide is limited in scope to diagnostic testing and complements existing language guides that relate to particular diseases.

Please feel free to actively distribute the guide to communities and advocacy groups who may find it helpful.

Methodology

This inclusive language guide for diagnostics was developed using a consensus-based survey method known as the Delphi process. This method involved an introductory webinar followed by participation in a survey that allowed participants to rank terms on a Likert scale and provide additional comments. The first edition was published in December 2023, following a consultation that ran from May to November of that year.

23 people from 14 countries participated in the Delphi process.

The guide is designed as a living document and submissions for additional terms or considerations are invited on an ongoing basis via the form below. Once we have enough suggestions for additional terms or updates, we will run another Delphi process and invite interested individuals to participate in a revision of the guide.

If you have any queries about the guide or its contents, please contact us.

Guide to preferred terminology

The preferred terminology includes a list of terms in current use and suggested, more inclusive alternatives that are preferred as they put people at the centre. This includes a list of terms relevant to diagnostics and testing that convey their meaning in a manner that is easy to understand and isn’t stigmatizing or de-humanizing.

Term in current use	Suggested alternative
Contact¹	Contact person
Defaulter	Person lost to follow up²
End user	Person who needs or is undergoing a diagnosis
Good or bad levels of [something being tested for]³	Within or outside the lower limit or level, or outside the upper limit or level
Patient	Person with a disease/condition
Presumed/presumptive	Person with a presumed disease/condition
Subject (in the context of diagnostics)	Person who needs or is undergoing a diagnosis
Suspect	Person with a presumed disease/condition
Test, testing [when managing rather than diagnosing a disease or condition, e.g. diabetes]⁴	Check(ing), monitor(ing) [e.g. glucose levels to manage diabetes]
Victim, sufferer, stricken	Person with a disease/condition
^{1. Contact tracing is the process of identifying people who have recently been in contact with someone diagnosed with an infectious disease. In this case the contact person is the person who has recently been in contact with someone diagnosed with an infectious disease. 2. A person who has been diagnosed but for one or several reasons has been unable to initiate recommended treatment. Describing a person as lost to follow up frames their discontinuation as an operational or programmatic failure. Labeling someone as a defaulter, however, puts the responsibility of discontinuing on the person themselves. 3. Good or bad makes it the person's achievement or fault when the result can be due to other underlying conditions or comorbidities. 4. Testing is conducted to identify the presence of a disease or condition (e.g. diabetes). When a person has already been diagnosed, it is more appropriate to refer to checking or monitoring for markers of the disease or condition (e.g. monitoring glucose levels)}

Key definitions

These terms, relevant to diagnostics and testing, are provided with definitions that convey their meaning in a manner that is easy to understand, without being stigmatizing or de-humanizing.

Bi-directional screening or simultaneous testing is performed on a person affected by a disease/condition, but for another disease/condition that can be an associated co-morbidity. The two diseases/conditions may or may not have an influence on each other.

Contact tracing, also referred to as contact investigation, is a systematic process to identify contact persons (those who have had contact with a person with an infectious disease, see table above), assess them for that disease, and provide appropriate treatment if needed.

A community-based diagnostic or test is performed close to where people congregate, and is delivered in a way that is responsive to their needs. A community-based test could be carried out at home, at a workplace, school, mobile testing van or other. Community-based testing is not necessarily related to people proactively seeking care.

Drug-susceptibility test, or DST, is a process of determining whether the organism causing a person’s disease has any resistance to certain medications, thereby helping determine the medicines to which the organism might be sensitive, so that the person can be prescribed appropriate, effective treatment(s).

A false positive is an incorrect test result that indicates the person has a disease or condition that they actually don’t have.

A false negative test result is obtained when a test is not able to detect whether the person has the disease or condition, and no clinical decision can be made based on the results. Technical factors, such as expired reagents, might also result in invalid test results that cannot be interpreted. In this case the test will have to be repeated.

A multiplex diagnostic or test can detect multiple diseases and/or conditions at the same time. It simultaneously detects multiple pathogens or targets in a single reaction using one sample.

Health workers are obligated to register the name of each person diagnosed with a notifiable disease or condition, usually in an official registry. Data on the number of cases (not including patient-sensitive or confidential data) are then reported at regular intervals to national health authorities. Notification allows health systems to remain vigilant and supports timely action to contain disease spread.

Point-of-care tests are diagnostics that are conducted close to where people who might have a disease or condition are located, or are being treated/managed, or where they could present with symptoms. The person is diagnosed using equipment in a primary care centre or clinic, without needing to send a sample away to a laboratory.

PCR technology is used to rapidly replicate a strand of DNA present in a a person’s clinical sample (e.g. sputum), allowing the DNA to be detected. For example, PCR can be used to detect whether DNA from a specific virus is present in a blood sample, and quantify viral load.

Samples are collected from a person for the purpose of diagnostic testing; these could include blood, urine, saliva, sputum, faeces, semen, and other bodily fluids and tissues. Sample collection can occur among people with or without symptoms, depending on the disease or condition. The samples are obtained using different methods depending on what is being tested.

Screening is the identification of people in a predetermined target group with an undiagnosed disease or condition using diagnostics, examinations or other procedures. Screening is often used to check for diseases and health conditions before there are any signs or symptoms. Screening does not always happen in a large population; in some cases, it will be conducted in specific populations or groups at risk.

Test-and-treat is the concept of conducting a test and immediately providing treatment and/or care for a person diagnosed with the disease or condition. Testing and provision of treatment occur at the same location.

Test validation is a process that determines the fitness of a test, which has been properly developed, optimized and standardized, for an intended purpose. It includes estimates of the analytical and diagnostic performance characteristics of a test. Validation in most settings is the process that is done by test developers prior to roll-out of the test.

Viral load refers to the amount of virus present in a person’s clinical sample.

I would like to be involved in the inclusive language guide for diagnostics.

The inclusive language guide for diagnostics is a living document. The terms added to the glossary are agreed upon via a Delphi process. The Delphi process for the current version (launched 12 December 2023) was completed in November 2023. Once we have enough suggestions for additional terms, we will run another Delphi process and invite interested individuals to participate. Thank you for your submission!

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