Question 1 (Brett P. & Elisa L.)

As per Brett et al 2012, challenges arose not from the way or stage at which patients were involved, but instead from the “colliding worlds” of researcher and sporadically involved patients.

A researcher’s goal of “high quality science” is unlikely to relate to a patient’s desire to see real impact from the outcomes. As a result, there is likely to be a power struggle that jeopardizes the meeting of scientific and ethical standards and can create a power struggle between researcher and patient that challenges the development and impact of the entire project.

To ensure a beneficial impact of PPI, it is vital that each party is clear about their roles and responsibilities for the project. By improving communication, and increasing the trust and respect between both parties, patients should be able to get involved in any stage of the study with a positive impact that far outweighs any lingering remnants of challenge.

I agree with the points that Brett has brought up in his answer. Challenges may arise when patients are involved as partners or collaborators on a research project because their views may cause conflict with the researchers' traditional academic approach.

This paper suggests that the best stage to involve patients in a research project is in the initial development phase, when research questions and agendas are being set. Patients can ensure that their concerns are addressed right from the beginning, and also positively influence the project by using their experiences to help identify relevant topics in POR.