Kickstarter definitions
What’s in a name? A few terms related to patient involvement explained in more detail. What do patient involvement, patient representative and expert by experience mean?
Patients are involved in and have an impact on decision-making processes in the everyday practice of research, policy and care (based on Pittens, 2013).
In the Kickstarter, we use the term patient involvement because this is the term most commonly used in international literature and by funding bodies. Not everyone with an ailment or disability considers themselves to be a patient. Alternative terms for ‘patient’ are client, expert by experience or people with condition X, for example. In exceptional cases, relatives may also be included here.
For research in the field of public health or prevention, this is occasionally expanded to include citizens. Keep in mind that patients’ and citizens’ perspectives will not always overlap.
The term ‘patient participation’ is hardly ever used in English literature these days. The terms ‘patient engagement’ and ‘patient involvement’ are more common. Patient involvement refers to a form of participation in which patients have a greater degree of influence. See also the NHS Health Research Authority website (UK).
The involvement of patients as test subjects in clinical research does not fall under the definition of patient involvement.
A patient representative is someone who speaks on behalf of a group of patients and can incorporate the actual experiences, concerns and wishes of the group in their contribution.
A patient representative is often a patient (or relative of a patient); some patient organisations have a policy officer in this role.
You can always ask a patient representative about the source of collective information. This will make the degree of representativeness and diversity of the information clear.
Patient representatives often follow training courses in the field of patient involvement and receive support from a patient organisation. This makes them valuable discussion partners for researchers.
An expert by experience has experience with an illness or disability (personal experience or caring for a loved one) and has sufficiently come to terms with this experience to be able to look at it from a distance and reflect on it.
The experience transcends the individual and is relevant. An expert by experience is able to bring together collective experiences and specify them.