What’s the difference between patients and participants?

As we begin this course, it is important to recognise that people engage with healthcare and research in many different ways.

Each of us may find ourselves in different roles at different times – sometimes as a patient, sometimes as a research participant, and sometimes in other capacities. Before we explore these roles in the context of genomics, let us take a moment to clarify how this course uses the terms ‘patient’, ‘participant’, and ‘patient partner’ or ‘patient advocate’.

In this course, the term patient refers to someone who receives medical care or treatment, now or in the past, or someone who has a long term health condition. Patients (especially young, disabled or elderly people) may be supported by caregivers, living alongside them, who consequently also develop lived experience or expertise.

We often refer to the individual participating in research as a participant. Depending on the study, this can be a patient, a healthy volunteer, a caregiver or a member of a community who is involved in the research. A participant contributes to research by providing research data, e.g. answering surveys, participating in a focus group discussion, undergoing tests or providing samples. In a clinical trial, the participant is the individual testing the drug.

We use patient partner or patient advocate in this course as a term to describe anyone who is bringing the perspective of a patient or a participant in dialogue with a healthcare provider, policymaker, researcher or other professional involved in the field of genomics.

You might have come across other terms that have been used throughout the world in different countries to describe people in this role. Other terms include patient advocate, patient advisor, public contributor, lived experience contributor, lived experience expert, public and patient voice, or consumer representative.

Each of these roles has an important part to play in the field of genomics. Each patient, participant or partner/advocate will have more impact if they have some understanding of the science underpinning genomics, as this will enable them to keep up with more technical discussions, to contribute to decision-making with more confidence, and to help translate some of the more complex ideas into accessible language for wider patient or research participant communities. Let’s continue with a high-level overview of key genomic concepts.