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Intro to Patient-Orientated Research

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Question 3 (Chelsea Y. & Elisa L.)

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1 Question 3 (Chelsea Y. & Elisa L.) on Thu Jun 22, 2017 1:38 pm


One of the highlights of this paper is the prevalence of PI tokenism in health research and how tokenistic practice in this setting is a self-fulfilling prophecy. Consider the following quotes taken from the paper:

"The no value perception put forward by the academic community should not be interpreted as PI not having value but rather as a reflection of the way in which academics themselves practiced PIā€”that is tokenistically." - pg 8

"...the value of PI was made more difficult by tokenistic practice, since the impact of PI is highly dependent on the quality of its conduct and on the openness and clarity with which it is reported." - pg 9

Briefly describe how PI tokenism leads to PI being undervalued and how this is a self-fulfilling prophecy.

Figure 2 illustrates the cycle of the self-fulfilling prophecy of PI tokenism. In your opinion, intercepting which part of the cycle would be the most effective in breaking the PI tokenism cycle? Propose a strategy in which this part of the cycle could be prevented.

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2 Pre Webinar 2 Discussion Questions on Mon Jul 31, 2017 3:55 pm

Elisa Lau

1. The undervalue of public involvement is a self-fulfilling prophecy through tokenism because tokenistic attitudes will lead to poor integration of public involvement in research. Poor practice generates poor results, and correspondingly, public involvement is perceived as being not valuable.

2. Intercepting the perception of public involvement as not being valuable would be most the effective in breaking the cycle. Altering perceptions will alter attitudes, and lead to better integration of PI as result. Altering perception may be done by conducting research on the impact of public involvement in research. .

3 Question 3 (Chelsea and Eliza) on Tue Aug 01, 2017 6:04 am

Chelsea Yeo

Eliza, I fully agree with your description of how PI tokenism leads to public involvement being undervalued and how this is a self-fulfilling prophecy. However, to add to your description, I would like to include the word stigma.

Prominently through the text, attitudes of researchers appears as a common theme throughout as both barriers and drivers of public involvement. Although I cannot speak to drivers as the authors have not given a clear definition of what this actually means (reasons PI is so important? what is happening now which pushes it forward? pre-requisits? it is not discernable from the text), the barriers to PI clearly indicate that researchers attitudes prevent public involvement from being effective. Researchers then "tick off the boxes for funding" (Snape et al., 2014) because they do not believe PI to be valuable but do it just to receive funding. Starting the research process with this preconceived notion of the efficacy and value of public involvement creates a certain stigma and bias surrounding efficacy of involving the public in research.

Stigma surrounding public involvement then likely negatively influences value to the research process for two reasons. The first, concerns to what extent the public is involved in the research. If the researchers believe the publics input is not of use they may be more likely to minimize the publics involvement. With minimal contributions PI then fails to demonstrate value. And second, unconscious bias plays a role in PI failing to demonstrate value. Even if public involvement typically does add value, once instance in which it fails to do so, reinforces these preconceived beliefs and researchers maintain their view that PI is not valuable.

This self-fulfilling prophecy must be intercepted by changing attitudes of researchers through demonstrating the value of PI. However the article seemed to take a different approach by laying out 5 wonderful ideas for changing how to make PI more than just tokenistic. I would like to speak to the fourth point that Snape et al. (2014) poses,"the need to redress power imbalances" (Snape et al. 2014). In order to redress power imbalances you must prove to researchers the value of public involvement. As you previously stated Eliza, this is done through research and evidence. The more evidence, education, and irrefutable information we can provide to researchers the more likely stigma surrounding PI will change and in turn change the perceptions and attitudes of researchers, promoting a closer power balance and team dynamic.

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