How does it feel to be in a trial? This video touches on some of the good and bad and the communication between the patient and the site. Dan talks about documentation that might be missing, like missing some adverse affects of the drug in the trial.
He makes a good point that as a site manager, many decisions are not yours to be made, rather the doctor is the one who makes the decision. He uses one case example discussing some comments he reviewed. The patient feels he spending a lot of time in the study for very little compensation. Studies are really not there to make money, and that the patient in the example is not doing it for the money.
Study participant satisfaction is important with 20 million participants in the US.
Are clinical trials being done to just “pay to get data”? That is one question he poses and how it makes the patient feel just like “another brick in the wall” if you will. I talk a lot about morality in just the normal course of healthcare and it sounds like there’s a touch of that missing with trials too.
All trials are not this way just as healthcare varies too, but if there is something missing and communication is not good and the participant does not feel like they are valued, so goes the information gathered. Also noted here are some requests to “fast” given to a participant and Dan comments on the potential danger here too, what if they are a diabetic? We are speaking in broad terms here as far as to what type of a trial this is for obvious reason so if in fact the trial was for a drug outside the area of diabetes for some other type of disease, the patient’s health could be put at risk.
To me this makes sense to ensure that every bit of medical information is available so something like this is not overlooked, like a personal health record, big hint here! It may not only move one up the ladder for consideration in participating, but also help protect you as a participant with having everything documented so that an error of requesting one to “fast” when their condition of diabetes would have the potential of jeopardizing their well being.
On my blog here I have links to TrialX whereby you can transfer stored healthcare information into Google Health or HeatlhVault in order to provide all your information in credible form in one place. Let’s face it if you have a record that has been populated with years of prescriptions and labs and other additional information, it helps with having vital information available to help avoid a preventable error as such. BD
Clinical Trial Information Use your PHR to refine and find results TrialX.Org Site