Based on the Gantt chart I just created this is an overview of what I need to do during the coming weeks. The focus is on study II.

Study II

Define key concept

The concepts included in the study are attitudes, awareness and willingness/inclination. The reason that willingness is grouped together with inclination, is that SH and HJ in a seminar thought that willingness does not sufficiently acknowledge that the situations and conditions that a person can be caught inside can have a strong influence on their ability to participate This is at least how I understood it. However, when I go to the dictionary, I find willingness defined as: “The quality or state of being willing; free choice or consent of the will; freedom from reluctance; readiness of the mind to do or forbear”. And as I understand it from there the willingness is not linked to the actual ability, only to the will. Of course, when “putting oneself” or maybe rather deriving (consciously and unconsciously) to such a state, the context and the individual circumstances need to be acknowledged for to some extent, but they do not predefine the willingness. In addition, willing according to another dictionary (Merriam Webster) means “inclined or favorably disposed in mind”. In other words, there seems to be little reason to complicate things and use inclination rather than willingness as I see it.

In order to come to a conclusion on what questions in the questionnaire captures the concept of willingness, it was decided in the last meeting with the co-authors that I create and send out a form to all the co-authors in which they get to categorize which questions in the questionnaire they consider to be about willingness. I did that and here is the total result when all the authors had answered. Here are my answers to the questions.

Clean data

In order to clean the data, I need to go through the data thoroughly and mark parts that are necessary to “clean” in some way. Thereafter I need to sit down with SS and discuss what we can decide on just me and him and what requires more people to decide upon.

Analyze data

Univariate analysis

Here I have started, but before I consider these analyses completed I also need to clean the data.

Ordinal an nominal data

The analyses of this data contain frequency and percentage.

Continuous data

The analyses of this data contain frequency, percentage, mean and standard deviation.

Bivariate analysis

Here I need to decide (based partly on the data and partly on the research literature) what variables are relevant to look into.

Stepwise multivariable regression analysis

Also left to be done (after the bivariate analysis).

Search literature

OJ had already conducted a systematic search about user participation in research. However, it was at the planning stage of the study about three years ago and it thus needs to be updated. Still, it can be good inspiration or starting point for my current literature searches.

The relevant terms as I see it are attitudes, awareness and willingness. Possibly also perception (of). In relation to public involvement, a large number of terms can be employed. I am here considering user involvement, user participation, public participation, public and patient involvement (PPI), user-driven research, community-based participatory research. co-design, participatory design, co-production of knowledge, patient-driven research, transdisciplinary research, collaborative research, citizens’ involvement, citizens’ participation, citizen science.

OJ also recommended a recent article by Lakomý et al. called The motivation for citizens’ involvement in life sciences research is predicted by age and gender The motivation for citizens’ involvement in life sciences research is predicted by age and gender.