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Intro to Patient-Orientated Research

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Question 2 (Shannon M. & Chelsea Y.)

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1 Question 2 (Shannon M. & Chelsea Y.) on Fri Jun 23, 2017 3:01 pm


Describe the power struggles that could occur when there is patient & public involvement in the research process. Why does this occur?

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2 Re: Question 2 (Shannon M. & Chelsea Y.) on Sun Aug 27, 2017 5:05 pm

The paper talks about how the use of PPI changes the existing power structure in research. Academic researchers and health professionals traditionally have had control over the direction and focus of research but with the inclusion of service users and the public, this has to change if the service users are to have an impact on the research. While this might not always result in a power struggle, if it is not done carefully it is easy to see how it could. Researchers may struggle with the change in power structure, especially when service user’s input leads the research in a new or different direction from where the researchers had been planning on taking it or when the input challenges accepted methodology and practices (such as the example of not having a placebo arm in a study which may impact the robustness of the study design). Tokenistic attitudes or a poor understanding of PPI principles on the researchers part could also lead to power struggles when the service users are expecting a larger role or feel undervalued.

Power struggles could also occur when service users are not well informed about their role and expect to have different tasks and responsibilities than they are given. Furthermore, if they are not involved in all parts of the study there may be issues with service users pushing back and challenge decisions that were made without them or parts of the study that are developed without them, such as interviewing protocols.

It appears that many of the power struggles touched upon on this article are possibly underlined by poor communication and education between the researchers and the service users as they navigate each other’s worlds. Making sure that every one is clear about and agrees with their role would be important in avoiding power struggles. Also researchers’ personal attitudes towards PPI and their understanding of what it should look like would also effect how they implement it. This article also touches upon how patient and public involvement may have a more positive impact when they are involved throughout the study and it could be possible this would also decrease power struggles as service users would have an understanding of the evolution of the project and have input at each level.

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Chelsea Yeo

Shannon, I agree with your analysis of the what and why concerning power struggles. I will be taking this time to do my own yet similar analysis.  

The article by Brett et al. (2012) identifies a number of potential occurrences when speaking to power struggles: compromising the quality of the research, tokenism and relinquishing control.

1.At times it is possible for there to be a disagreement when considering the scientific methods of the research study. For example, public and patients may feel as though a portion is unethical and therefore opt to remove the placebo arm. There is then a power struggle to re-establish a good quality research design through compromise. It can be challenging for both parties to create a balance between good quality and appropriate research.
2.Unaware of the benefits of public/patients in the research and/or in trying to comply with policy it is possible for tokenism to be a considered a power struggle. As we have learnt over the last number of weeks, tokenism devalues the input of the public/patient and therefore causes researchers to ignore or limit the opinions of the public/patients and causes the public/patients to stop participating.
3.Lastly, it is difficult for researchers to relinquish control of their studies by asking for the input of others.

The question of why this occurs is answered by researchers previously having all of the control over what is researched. It is difficult when you are used to being in control to allow for others to input into those decisions. Especially if the researcher believes the input is not valuable. In order to change the power struggle, education on both ends is required to balance power. It is important for the researchers to educate the public/patients on the research process and it is important for the public/patients to educate the researchers on their experiences. With more education public/patients will be better able to understand the logic for making decisions concerning study design and content, and researchers will be able to see first-hand the quality of the input that can be provided by the public/patients.

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