Elsewhere I talk about clinical research.
Suppose that a research participant wants information about a clinical trial. What types of information would this person want? I was thinking to model information types as follows:
- Logistical information
- Research participant rights
- Health information
- Information about the particular clinical trial
Logistical information refers to all the metadata about the clinical trial, including the fact that the trial exists, who is managing it, where it is, what commitment participants make in joining, who qualifies to join, and who to contact for more information. Pharma companies are exploring being more open with this data even though they wish to withhold a lot of it too. At least they want the fact of the existence of the trials to be more available to potential participants, which is a long overdue concept to support. It is a matter of justice to allow stakeholders in the development of medical treatments to be able to find and volunteer for trials relevant to their interests. Pharma organizations also want this for benevolent reasons and because it advances their business model. Every single trial will have its own logistical information; perhaps all of this information could be sorted into short uniform fields and go in a database.
Research participants rights are whatever every research participant should know before participating in a clinical trials. These are not well articulated anywhere, and they certainly are not presented in a uniform way at every trial, but there is some unwritten set of rights which are universal and which could be better presented and discussed. I would like for absolutely everyone conducting clinical research to acknowledge some presentation of research participant rights, probably which would be either endorsed by a government or some major nonprofit. Presumably they would agree with those rights but if not, then still they could say something about rights. Participants have some kind of rights and this ought to be a global conversation to be presented in about a page of text.
Health information is less on the agenda of clinical researchers because it is complicated, seems distant from the research itself, and is troublesome to explain. The idea here is that if research seeks to solve a health problem, and participants agree to participate in that research, then the researchers ought to make sure that the participants understand the health problem. So for example if someone has a cancer drug they want to test, and they recruit people to test the drug in their bodies on the premise of researching a disease, then the researchers have some obligation to provide education about the disease fundamentals even if those are unrelated to their research. I am expecting the researchers to provide a layman explanation of the disease. Maybe they write this if they like no existing explanations, or maybe they just recommend an existing explanation. These materials would be made per disease, and if multiple research projects all focused on the same disease, then they could share this base set of educational tools.
Lastly the researchers share information about their particular clinical trial. They say what they will. Every trial would be different. Researchers are good enough at doing this.
Researchers typically want to improve 1, think 4 is good enough, and do not expect that 2 or 3 matter much at all. I would like to increase the obligation for all researchers to give the second and third information types because those most benefit all research participants personally.