Many patients have heard the term ‘clinical trials’. But relatively few patients understand how the results of clinical trials give us valuable information for evaluating existing treatments.
We wanted to use UPL to communicate how the outcomes of clinical trials may help patients with their healthcare teams weigh the risks and benefits of a treatment. The goal was not to communicate the results of any one trial, but to help patients understand how trials are constructed, how measurements are gathered, and how results are compared. We focused specifically on oncology, although many of the concepts apply to all clinical trials.
Collaborating to Apply the UPL
To tackle this challenge, we held a co-creation session with patients, caregivers, nurses, advocacy groups, and communications experts. We spent a lot of time doing activities focused on clinical trials, and how patients and caregivers related to them. Through these sessions, we learned that many patients think of clinical trials as a possible treatment option, not a source of information about treatments. We then worked with our participants to make a resource that explains the role of clinical trials as a way to better understand treatment options. After the session, we validated the prototypes with patients and caregivers so that we could create a single resource.
Because this is a complex topic and patients have different levels of knowledge, we created a very long resource — almost 20 pages. But we divided the resource up into levels so that patients could read different parts at different times, based on their level of knowledge, and where they are in their treatment journey.