Designing clinical trials tools with patient-centricity in mind (Guest blog)
17.05.16
Improvements
This experience from finding a trial, together with the actual trial experience, made it clear that some action points could be taken, to improve trial access and comfort of the participants during a trial.
From my point of view, a first clear action point that should be taken, is to work on the image of clinical trials. There is often a bad reputation attached to clinical trials. By informing patients better about what trials are, what the risks are, and what the possible benefits are, a better image could be created. Awareness on clinical trials is key.
Secondly, I would highlight that having access to clinical trials is a big issue. Most of the times, the information about clinical trials is not easy to find, and where you do find it, it is complex and technical. Therefore, having a lay summary available in native languages could be a great help. Also, being able to participate in a trial should become a standard choice for every treatment. Every patient should be informed about which clinical trials are available for his or her condition.
Speeding up recruitment and increasing retention
On average over 80% of trials do not start as anticipated due to recruitment issues and with drop-out percentages in trials ranging between 10% and 40% on average. Recognising these problem points, I decided to stop regretting and to take action. This resulted in two tools that I developed to address these problem points.
The first one concerns recruitment. Users of our online patient portal www.esperity.com can indicate whether or not they have an interest in being part of a patient registry. Every time a new trial comes out, these members will receive notifications about the trials in their region, after which they can indicate if they would like to be put in contact with the local site and schedule a first screening visit.
The second tool we have developed is called miClinicalTrials (www.miclinicaltrials.com), and it increases the comfort of patients who are actually participating in trials.
This online tool gives trial participants access to their informed consent, with a lay summary, and additional information, such as how to take medication or how to recognise adverse events. The most important feature of this tool is that it allows trial participants to always have access to their latest trial protocol calendar, with notes from the PI or research nurse, on how to prepare their next visit. Often, trial participants forget to take their list of medication, or just don’t show up to the consultation due to miscommunication. With www.miclinicaltrials.com, trial subjects will always be up to date, avoiding miscommunication. Trial subjects will always have their trial information at their disposal. Anywhere, anytime.
This tool can also be used to assess the experience of patients in the recruitment and intake process, understanding their needs, to learn how future recruitments can be facilitated. I believe that building a communication channel with your trial subjects increases engagement, resulting in higher trial retention.
These tools have been designed to move towards true patient-centricity, by putting patients first.
