Why participants (and data) are so important

Data is vital for any research study.  And in most cases, data can only be gleaned when people are willing to give up their time to participate in such studies.  This short blog outlines why participants (and data) are important to Dementia and Imagination as a study, and to me specifically, as a researcher on this project.  

Why do I need data?  

Dementia and Imagination is a diverse, complex study, with researchers from all the Universities involved striving to achieve answers to a multitude of questions.  My role in this is to discover how the perceptions and beliefs of artists and other professionals engaged in the project influence both the community of practice and the community of place.  Can participatory art for people with dementia have a positive and sustainable effect on those involved and in their wider circle - leading to a more dementia-friendly society?  

By using social network analysis, I will learn whether social contagion occurs through community of place and practice, whether some people’s opinions have a disproportionate influence on others, and whether this social contagion is influenced by others’ opinions of the art intervention.  Understanding how social contagion occurs in these two types of community will be of relevance to practitioners and researchers alike.  

How am I collecting this data?

This is a relatively untested method of analysis in this field, and there is little to go on with regard to academic literature to guide this process.  One study most similar to what I am aiming to achieve took place in the Midwestern United States in the 1950’s.  Coleman and colleagues sought to observe the acceptance of a new drug by General Practitioners in the area, and to understand how adoption rates spread throughout their community of practice by gaining information on these doctors’ social network.  

Topic area aside, there is one main difference between their data collection procedures and mine.  Coleman and his team already had an identifiable sample.  Discovering who were the General Practitioners in the area, that is, who made up the network of doctors under scrutiny, was a reasonably simple task.  They could then proceed to interview each doctor to confirm both their prescribing practices, and with whom they discussed these on a professional basis.  In Dementia and Imagination, the task of discovering who makes up the social networks of our intervention artists and other professionals has proven to be a little trickier.

An online questionnaire was deemed the most effective approach to reach the geographical area covered by Dementia and Imagination, and also to reach the number of participants needed to carry out this type of analysis.  As part of this questionnaire, each of the intervention artists and other professionals directly involved with the study has been asked to name those people who they discuss professional working practices with in the course of an ordinary week, and also to provide us with their email addresses.  Those named will also be sent a questionnaire and asked to do the same, and so on and so forth.  From this information, we can begin to build social networks that will elucidate the mechanisms of social contagion at play.  Straightforward enough in principle, but in practice our overall response rate has been low, and from those who have kindly filled in our questionnaire, many have opted not to name the members of their network. Why is this?

For those who have been asked to participate…

We have hypothesised that one of the main reasons for this lack of response is that people are wary of passing on contact details, which they may see as confidential, or wary of being identified themselves as having filled in this questionnaire.  

So I wanted to take this opportunity to confirm that all information collected from the questionnaires is kept strictly confidential. I don’t include anyone’s name or any other information that might be identifiable in the data from the survey.  

As I’ve hopefully explained here, all the information that is provided is absolutely vital to the study, and without it, neither I, nor any other researcher, would be able to complete our research.  From research comes change, so if people can fill in this survey as fully as they possibly can, they will be making a very positive contribution. 


by Helen Daniels

Added on: 01 November 2015

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