Improving information for participants in clinical research projects
Presenting clear information to the public
For several years now, The Ink Link has been working with several public laboratories on clinical trials in Africa and elsewhere. The Institut Pasteur, Bordeaux University and Inserm Montpellier are each developing treatments, vaccines and other therapeutic protocols to improve care for local populations and treat neglected diseases.
In clinical trials, populations must sign a consent form to agree to participate in the research. However, this consent form often has many written pages, and many people have reading difficulties. It is difficult for research teams to know whether the populations involved fully understand the issues involved in clinical trials, and are aware of their rights, including the right to withdraw their consent at any time.
A variety of clinical trials for local populations
All clinical trials are offered by public laboratories for vulnerable populations with precarious access to healthcare. The tests are not carried out on an international scale, as the diseases affect only a small proportion of the population.
In particular, The Ink Link has worked with the Institut Pasteur to administrate the Hepatitis B vaccination earlier in life, in order to better protect newborns in Africa, to test a vaccine against Shigella, and to detect G6PD-deficient people in French Guiana in order to better manage malaria treatments.
The Ink Link has teamed up with the University of Bordeaux on a project to test antibiotics to treat meningeal tuberculosis, the most dangerous form of the disease. It involves testing different doses of antibiotics to find out the ideal quantity for the drug to be effective.
The last project, carried out with Inserm Montpellier, was set up to improve treatment for people with both tuberculosis and HIV on the African and Asian continents.
For each of these projects, The Ink Link was responsible for producing an illustrated translation of the consent form, to ensure that people correctly understood all the terms of the form and were clearly informed about the process before deciding whether to take part in the trials.
How to illustrate sometimes abstract concepts?
To begin each project, The Ink Link team talked to the researchers and read the paper version of the consent form. From this, the cartoonists were able to draw up a first version of the script.
The main difficulty encountered by them was to illustrate complicated or highly abstract notions such as placebo or personal data, and to convey very important concepts such as the right to withdraw. Furthermore, the project was carried out entirely remotely. It was therefore not possible to present the first drawings to the local population and develop the project by working locally with the people affected.
Comic stories were finally produced from the reworked scenarios, and the field teams were able to correct these first drafts before they were given to all the participants in the clinical trials.
These various projects were mainly carried out by David Combet, but also by Aude Mermilliod for the Hepatitis B project and Sandra Muller for the project in French Guiana.
A project with a future!
Feedback from the field has been very positive.
These projects have given rise to the idea of creating an image library, illustrating concepts linked to clinical research, using images already developed and creating new ones. This project is being developed in close collaboration with the Pasteur Institute, and will be open and accessible to all public research labs, facilitating communication between researchers and the public for all healthcare projects.
In the future, The Ink Link hopes to work directly in the field to produce images adapted to different populations and contexts to enrich the image bank, again in collaboration with the Institut Pasteur.