Justification for the Kickstarter

The Kickstarter responds to the increasing need among researchers for knowledge, tools and skills for setting up patient involvement. 

Creating the Kickstarter 

The Kickstarter was developed in five phases: 

• Preliminary research into current methodology and justification 
• Assessment of researchers’ needs 
• Development of the Kickstarter 
• Validation and improvement 
• Implementation and dissemination 

According to researchers’ wishes 

The wishes and needs of researchers took a prominent place in creating the Kickstarter. A total of 23 researchers shared their experiences, obstacles and needs regarding both content and structure in focus groups. 

The participating researchers formed a diverse group – from senior to junior researchers from academic and non-academic centres, from physician-researchers to full-time researchers, from applied to fundamental research, both experienced and inexperienced with patient involvement. 

The focus groups showed that researchers end up on the website with a variety of questions. The Kickstarter’s topics are in line with these. 

The prototype that resulted from the focus groups was extensively tested by eleven researchers and then refined. 

Describing researchers’ experiences, needs, and perceptions 

During the development of the Kickstarter, we learned a lot about researchers’ experiences, needs and perceptions regarding the involvement of patients in research. The Athena Institute and INVOLV jointly wrote a scientific article about those findings and how they resulted in the existing Kickstarter. You can read the article on the website of Oxford Academic. 

Theoretical foundation

The Reasoned Action Approach was the theoretical basis for the Kickstarter. This model is an extension of the Theory of Planned Behaviour, which aims to explain how behavioural changes come about. 

During the focus groups, researchers looked at which factors hinder patient involvement and which factors support it. By responding to these factors, the Kickstarter can facilitate behavioural change in researchers with regard to setting up meaningful involvement. The Kickstarter attempts to bridge the intention-behaviour gap of researchers who wish to use patient involvement, but are not sure how to do this. They can find the necessary knowledge and tools in the Kickstarter. 

Source: Fishbein, M. and I. Ajzen, Predicting and changing behavior: the reasoned action approach. 2010, New York: Psychology Press. 

Evaluation of the Kickstarter

In her dissertation on patient involvement, Simone Harmsen also analysed the implementation of the Kickstarter. It would seem that the tool supports researchers in gaining more knowledge about patient involvement. The health funds and patient organisations that refer to it say that researchers consider it to be a useful source of information that was not previously available. Researchers believe that the Kickstarter does indeed provide them with additional information on involvement. 

Read Simone Harmsen’s evaluation (in Dutch)