The Language of Involvement

Involving the public is crucial to ensuring health and care services are designed as effectively as possible. However, it can be difficult to get the language of involvement right. Alice Beaumont, in the HIN's Insights team, shares what we’ve learnt about using appropriate language around involvement and how this can help improve engagement.

As our principal tool for expression and communication, language can be a vehicle for positive change. However there is a considerable amount of pressure when it comes to choosing how best to convey meaning. This is particularly true in the context of patient and public involvement (PPI) where a range of words and phrases are used synonymously, and the terminology used is not standardised. This can be confusing and has arguably slowed the adoption of involvement in improving healthcare services. At the HIN, we are keen to use terms that people understand and prefer, and this is a challenge that we have grappled with when developing our Involvement Strategy.

Several of the terms used to define this area of work – particularly engagement, participation, and involvement – are used interchangeably, and other terms like co-production and co-design can add further complexity. In our strategy we use the word involvement as an overarching term to describe activities that actively engage people in AHSN programmes, seeking their feedback and using their insights to inform design and delivery. We see involvement as a way of working where service providers, commissioners and users work together to reach a collective outcome.

Within involvement, the idea of patient engagement features heavily. This phrase is generally used to describe the notion of producing more responsive and transparent healthcare systems. In the context of PPI however, the word engagement can be misleading. Unlike in involvement (where it is implied that inclusion is necessary), engagement can indicate that there is little to no expectation of reciprocal action from the participants within activities. The term engagement can also generate confusion between involvement and person-centred care (PCC, also known as care planning), which refers to working in partnership to focus care on the needs of individuals.

Another word that is frequently used in the context of PPI is participation, which is usually applied specifically to involvement within health research. Additionally, co-production and co-design refer to a PPI process which emphasises the sharing of power and responsibility. While these terms may describe distinct approaches to involvement, they all share the philosophy of valuing partnership and collaboration.

The challenges of language are not limited to defining the theory of involvement; we also need to be careful when describing the people that we involve. The terms patients and public are often used mutually with words including citizen, consumer, layperson, expert by experience or service user. Choosing between these can spark debate, for example the term consumer is often rejected as it can imply an element of choice, which does not come with an illness.

Some people we involve dislike being referred to as experts by experience, as they may not see themselves as experts and feel pressured by this description. Similarly, patient is generally accepted in certain contexts, such as when discussing physical conditions. However within the sectors of mental health and intellectual disability, the term service users is more often used, and, where meaning will not be lost, we should simply say people.

Within the HIN’s Involvement Strategy, we want to involve people with lived experience, which is a widely accepted and inclusive term. On its own, it is unclear what lived experience refers to, but within the context of healthcare, we define it as personal knowledge about healthcare systems gained directly and first-hand, rather than through representations constructed by other people.

When delving into discussions about what we should and shouldn’t say, it is easy to become confused, or even overwhelmed. It is therefore important to remember that the way we approach involvement, and how we communicate with people and communities, should be primarily judged by the outcomes we achieve, rather than the words we choose to describe it. There is not one right answer when it comes to the language of involvement; all we can do is use tact and sensitivity. If we start by asking people what language they would prefer, and adapt according to the context and individuals, then there really isn’t too much to be afraid of.