It’s surprising culturally how uncommon it is to participate in clinical research. Blood donation is something we’ve cemented as a way to give back and help, but participation in clinical tests really doesn’t have the same cultural standing.
I think the for most people the association for clinical trials is that you're doing something that has a substantial chance of being harmful to your body and receive a monetary reward in exchange. At least that's how I recall things, with many students making quite a comfortable living by participating in their share of trials. For people suffering from a life defining condition the situation is of course different, but those people are in the minority. From what I've seen in LC and ME/CFS research in the past years I am more shocked by how poorly conducted and thought out a vast majority of trials are. It really seems a huge chunk of money goes out of the window where somebody is simply hoping for a miracle without wanting to do the hard yards first.
I do remember making a week’s worth of minimum wage salary and getting an all paid fine dining lunch in a single day by being a “medical model” for demonstration of some sort of new imaging technology at a conference a couple years ago. Weird experience, money was good thouh.
My very unsystematic observation is that participation in clinic trials is portrayed in fiction as either something that young people, often students, do when they are hard up, which caries a risk of serious side effects or even death, especially when undertaken by criminal pharmaceutical companies or rogue scientists or as something people with a medical condition do in order to find a wonder cure not currently available to the general public.
Those sort of clinical trials that are high risk and high reward are for new drugs being tested on healthy people before being tested on sick people. The majority of clinical trials are the later stage ones where the drug has already been tested and found safe for human use, and is now being tested on sick people to see whether they are better than placebo or better than other existing treatments. I would expect payment levels to be quite different for the two different types of trials. In the first type, the risks to the individual are high, and the only reward is monetary. In the second, the risk is much lower, and the reward is the possiblity of improvement or recovery, as well as monetary provision to cover costs.
@Kitty did a really good post on this a while back but for those who are more ill and may be on benefits then I think there needs to be a careful look at this question. It is really important for those more severe that anything which might give what might be a small % improvement but that is huge with regards making a difference (eg to going downhill, being able to do some essential to life tasks more than they were before, sit up longer) that tests are done on those who aren't the most mild. And that 'adverse events' are reported with contexts because it's important to have people who might have other comorbidities or types that 'come with' being severe as well as seeing which people tended to benefit. But vitally the most important part of getting any of those more ill involved is safety, accessibility, and that level of care and reporting so that people know they are as safe as they can be and that their results and experience is being reported. ie perhaps the money that might have gone on payments / incentives that they wouldn't be in a position to sign up for is instead used to come up with a package (working with those who are similarly ill) to cover minimising exertion and risk. It's very hard because I get the impression for many other illnesses these home visits or level of care for those so ill would already be there, and there would be clinical clinics at the very least for them so they would have their health monitored and they could be identified and their situation understood on such records. As long as this issue exists and those more severe are beyond abandoned then they will continue to be because without such economies of scale of having these basics then how can researchers spot where there might be a good number that could be accessed? And how can their bodies be included in such research to prove or find out how they react.
