Public participation in scientific studies varies significantly, influenced by diverse societal attitudes.
Understanding these attitudes is essential, as they directly impact the level of public engagement and the degree of trust in scientific advancements.
This discussion seeks to explore how perceptions, cultural beliefs, and past experiences shape people's willingness to partake in research. Additionally, it will examine the consequences of these attitudes for the scientific community's ability to gather comprehensive data and foster a collaborative relationship with the public.
By delving into these aspects, we aim to uncover strategies to enhance public involvement and trust in science.
Written by
AnnaHU
HealthUnlocked
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Society's attitudes change and may not be based on a balanced view. Recent news about failings in the NHS and, infected blood will not have helped. It doesn't affect my view of participation in studies as a stroke lived-experience person. I am wary of clinical trials because of my medical history and, a suspicion that my CY2C19 allele profile is for rapid metabolisation of drugs. There is an imbalance in medical studies by sex and ethnicity. Consider troponin levels that historically related to men, and therefore didn't properly evaluate heart damage in women. Ethnicities appear to be under-represented in medical studies and trials. I have only come across one black chief investigator in a study. It needs clinicians and others from ethnicities to explain how more involvement can be achieved. As a straight white man, I would be rightly called out for presupposing that I had insight and answers.
I have pulmonary fibrosis as a consequence of pulmonary toxicity secondary to amiodarone and dronedarone. Additionally, I'm registered as sight impaired as a consequence of a stroke that might not have happened if I'd been properly advised by an NHS EP to take an anticoagulant. Should I make my views known so that others don't take that path: absolutely. Should big Pharma compensate people when their products cause problems: yes, but without court cases.
Can we trust medical research if it becomes overly reliant on generative AI to save costs (it has learnt from published data)? For the same reason I question use of AI in some research (it depends on papers that have been published), I tend to be careful about meta data studies.
Lived-experience involvement in studies is essential. However, what is the use of app driven treatment at home when there are six million people who are digitally excluded? Why use apps for stroke patients when 70% will have a visual disability after the stroke, reducing to 25% who are permanently sight impaired?
We are a rich resource that can benefit others. To borrow from Nike; "just do it!"
Personally it would be aged related as now aged 64 I would only take part in a trial if it was relevant to me and an illness I had and now no trial for something like flu treatment or a financial incentive as I have heard too much negative stories and as a fortunate quite healthy person I wouldn't want to risk my absolute priority which as you get older must be your health . My family wouldn't support me either .
John - boy-92 addresses the issues of AI which I too believe has great significance .
To some extent, my answer is Yes but not completely. I've heard a lot of scary stories about people being seriously hurt while participating in research program . I've also seen other people doing it successfully. I think it's 50-50 but I'll not want to risk my life.
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