Unit II Thought discussion

I think that motivations could be of a variety of natures and if they are not aligned tensions will surely arise.

The typical example is when researchers “use” PPI as a way to get their research funded, driven by the need to impulse their careers, giving false hopes to patients they are involving. On the other hand, I think that a very “passionate” patient, who is either too focused on his/her own life experience and can’t extrapolate it to a wider view of the condition, or who wants to impose his/her points of views to the research team won’t be very helpful.

About people with long-term conditions or people in need of an immediate answer, I think they may become frustrated when things don’t go as expected or promised, when a project they have been working on does not get funded, when study results are not as expected, etc.

In my opinion, when everyone is on the same page and each of the members of the team know their roles and responsibilities, when things are planned and expectations are set from the beginning, it is then when research benefits the most. I believe that educating the research team and P/P on many aspects of this interaction could avoid lots of false expectations and bad experiences.

In order to reduce tensions and set realistic expectations for the patients and public getting involved is to be thoroughly open and explain how research works, giving examples of time frames involved in trials from start to end. Before a patient agrees to become involved ensure the person understands and becomes familiar with the study outcomes and how this will impact on long term care, even though it could take years to achieve. Its also important for them to be aware that the trial may not answer the study question.

As Valeria and Donna point out realistic expectations must be explained to the public prior to them getting involved in a research project. Explaining exactly what is planned for the trial and the expected outcomes will help patients understand the limitations of trials before they get their hopes up and tensions arise. Realistically people should want to get involved to help future generations with long term conditions not necessarily themselves.

Valeria has already mentioned that motivation in different forms is in order.  It is imperative on the researcher that patients are oriented to understand, it call for mentorship on the part of the patient, careful relentless support to the patient and off course even motivation of the researcher towards understanding the need for the patient to be involved.

Otherwise it is the researcher who loses because patients may not be involved, and therefore the research would not be of benefit to the patient population.

A patient/carer's motivation for involvement in research would be altrusitic whereas for researchers the motivation would chiefly be the enhanced professional standing one gains from research. A certain amount of intellectual curiosity is always at the background for people who do research however unlike patients who do not stand to achieve any material gain from being involved in research , the researchers have professional (academic tenures, professional growth) and financial stakes (pharmaceutical funded trials offering heavy financial compensations, patents arising out of successful drug discoveries etc) even in some cases. These contrasting motivations can create tensions during collaborative work for research.

Re patient expectations for rapid research results , I agree that sometimes such expectations are too unrealistic to be met , however this also emphasizes the need to set a research agenda at a global level that aims to seeks answers to questions that are relevant to patient needs and expectations. As researchers I feel that I is our moral responsiblity to explore research designs that offer unique and speedy ways to seeking answers . The current research process is such that it takes an average of 10-12 years for a new drug to reach the market with billions of investment and of the thousands of molecules that are explored for development only a handful go on to be developed as drugs . The regulatory red tape does not help expediting this process either . So sometimes when our patients feel frustrated by this tedious process, I would understand that.