As a designer at a hospital for the past twelve years, I have worked alongside doctors, nurses and other clinical care providers, as well as researchers who work on clinical research studies and clinical trials. The Hippocratic Oath that physicians take includes the declaration that they will ‘do no harm’. As a designer, I’ve tried to internalize that same value with my own work.
We know design is not neutral. Design can be a tool or a dagger. As designers, we have the power to impact our communities in a very real way and as such, we have a responsibility to reflect those communities in our designs in a way that is inclusive and thoughtful.
While it depends on the type of research and the type of study, often times researchers will be interested in studying a specific population or populations of people. That could be anything from ‘healthy people age 18-64’ or it could be more specific like ‘people who have received a kidney transplant less than a year ago’, it all depends on what is being studied.
In order to get participants in their research, investigators may advertise or promote their study in a number of ways. If you’ve ever taken public transportation (in Boston, especially), you may have noticed recruitment advertisements for research studies from local universities and hospitals. For clinical trials, patients of the clinician researcher will be approached about participating in the study. There are also databases that list current open studies across the web, including NIH funded research.
How are you designing your recruitment process? Is it inclusive? What imagery are you using in your recruitment materials? Are the people in your images representative of the community where you conduct your research? Have you translated your recruitment materials into any other languages? Were any members of the community involved in the design of your materials? Are your recruitment materials accessible? Asking these questions before you begin conducting your research will ultimately make your study stronger. Think about this in the context of coronavirus and some of the initial vaccine trials and research studies. There were studies that had an extremely low number of participants who were largely white males. If you unintentionally end up with a virtually homogeneous study population, you need to do the work and look at how your recruitment process has impacted the diversity of your population. If you’re looking in the same places and recruiting using the same methods you’ve always used, why do you expect to get different results? You’re a scientist, you know that’s not how it works.
It isn’t just the materials that can be the issue when it comes to study diversity, either. What is the decision-making process for patient recruitment at the bedside or during a visit? How do you decide which patients to approach for a given research study or trial? Do you approach all patients? If the answer is no, for any reason, consider how your decision-making process may influence the research. A more objective way of recruiting patients would be to identify eligible patients and create an opportunity for them to make the decision themselves. A patient has the right to know what available options exist for their condition so they can make informed decisions.
There may be any number of reasons someone might not feel comfortable asking a patient about participating in clinical research – including some that are cultural or historical, given the treatment of research participants in the past, particularly Black men and women. If a clinician is uncomfortable talking to a patient about clinical research for any reason, they need to get over that because they’re doing a disservice to their patients when they don’t talk to them.
Instead of ignoring the subject, why not create a space for a dialogue? Create culturally sensitive materials around clinical research that are geared towards specific audiences and are translated into different languages. If you are studying a condition or disability, try to find an artist or designer with that condition who will have a valuable perspective to bring to the table. When you empower members of your community to own their health stories in this way, you create a connection that transcends your study and your research and can have a lasting impact.
The bottom line is that you need to give your patients all the information available, don’t just pick and choose what information you find easy to communicate. If they don’t have all the information, how can they make a truly informed decision about their health?