Words and their meaning are always important. There is little purpose pointing at a 'tree' and calling it a 'dog'.
Words in the world of research often have to be very precise to ensure that we are describing and measuring like with like to compare and contrast. The language has to be even and balanced for equipoise.
It is also important to recognise and value the source and inspiration so I wish to thank Sarah Gibson who is writing an article for McPin about this topic.
Just Words
The words INVOLVEMENT, ENGAGEMENT and PARTICIPATION are at times interchangeable in different contexts but there are some definitions that are commonly used.
Personally, I tend to use the terms in a more precise manner when I am working with people talking about or working in research. It is a fine-tuning for ease of communication and understanding.
‘INVOLVEMENT’, for me, defines and describes an ‘active presence’ where people who use services, their carers and members of the public have real say and influence in the decision making processes about their health including health research. There is a tangible sense of gaining equality or control. This does not always mean that I am in the room, at the table or necessarily right in my opinions.
The NIHR INVOLVE promotes active involvement in research. Their website provides guidance and numerous examples of how the public of informing, shaping and influencing research ideas, design, delivery and dissemination on a very practical basis.
'PARTICIPATION’ is the word most used to describe people ‘taking part in a research study’ i.e. as someone who has consented to participate.
A Person not a Subject
I still want to be treated with respect as a person not a ‘subject’ and to be able to make a proper ‘informed decision to consent’ but I will have no real influencing power over the medical intervention, whether I am on the control or treatment arm of the study or to say the time and place of taking part.
I do always retain the option to withdraw at any time.
There is a certain ‘passivity’ about this relationship which is similar to that of a guide and tourist. There is no guarantee that you will hear about the destination reached by the researchers. . Research participants do, however, often mention that they learned more about their condition through the additional interactions with health professionals so there is a minor level of gaining control.
Science and medicine organisations including The Wellcome Trust organise and support many very successful campaigns around public understanding. These have for years been described as public 'ENGAGEMENT' and tend to be about raising awareness, knowledge and comprehension about the role of science in everyday life. It all tends to be at the consultation end of the continuum (or the bottom of Arnstein’s Ladder).
It doesn’t, of course, take long to look on any research website and see that that each of these words - involve, participate and engage - are completely interchangeable with people having different interpretations. There is nothing wrong, misguided or misleading about such descriptions.
The only value in any communication is that both sides are each clear about they mean and consequences of any discussion about what is intended.
However, in all spheres of endeavour, people are keen to know what they are doing, the boundaries of the task and the no-go areas.
In recent years, there has been a greater need to provide precision and clarity about the language that is used to engage, involve and help the public participate in research.
Despite the precise division of these terms there has also been a growing understanding that they are inter-connected and inter-dependent.
If the public and patients are not given the opportunity to talk about research they are less likely to join a clinical trial or help shape the questions that need to be asked.
Despite this pedantry, all that matters to easily find out...
- What research is taking place and where?
- Whether that research is appropriate and can I join a study?
- How to provide feedback and information from my experiences?
- How and where to work beside researchers to improve research?
- Where to donate blood, tissue, data or my time?
- How to raise awareness and funds of research?
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