Why are people with a certain illness threatened by research? The term feeling like a 'guinea pig' is often used. Yet how else are people supposed to learn about an illness in a way that helps move quality of care/quality of life/cure forward?

I am not referring to research involving the human body as that is understandably a controversial area. I am referring to the completing of questionnaires. If someone will put the time into developing a questionnaire aimed at enhancing patient well-being, why are some patients unwilling to help?

Perhaps there are some people here who have personal experience of refusing to take part in such research who could offer insight into this. I am not making any judgments at all - just trying to understand the situation more.

All the Best,

Nicola

Many people today that have a death type of illness are wanting to try anything experimental that could help them. I don't see it the way you do at least in America.

Since the Gitmo detainees don't have any rights anyway, why not experiment on them?




























J/K btw.

I am referring to the completing of questionnaires. If someone will put the time into developing a questionnaire aimed at enhancing patient well-being, why are some patients unwilling to help?
I have grown to hate surveys, questionaires, and polls! Register to vote and you will be inundated with surveys, questionaires, and polls. Buy any consumer good of any practical value nowadays, be it a car, service for the car, a new computer, eating at restaurant, or a stay at a hospital, and you will be asked to fill out a survey or questionaire. Yech!

If I complied with revery request for information I would have a lot less spare time and a lot less privacy. What little spare time and privacy I have left are very rare and valuable commodities. I don't give them out freely.

I am referring to the completing of questionnaires. If someone will put the time into developing a questionnaire aimed at enhancing patient well-being, why are some patients unwilling to help?

I can think of two reasons:

1. The patient is not sure whether the survey is anonymous, and fears that something they say in the survey could be used against them.

2. Taking part in surveys is a double-edged sword: A questionnarie often contains a question to the effect of "Would you like to take part in another survey?" or "Have you already taken part in a survey?" If the person answers "yes", their questionnarie will likely be excluded on the grounds of "being too willing to participate and thus possibly lying". At least some people know this, so they don't bother.

Could it be that so many of the sick people are elderly and they have a suspicion of people wanting to know their personal business?

Its usually easier if the survey is online and short