Researcher experience and opportunities
According to CISCRP.org, recent studies show that participant retention rates fell from 69% in 2000 to 48% in 2006, and the trend seems to be continuing. Furthermore, participants drop out more often during Phase II and III trials than in earlier phases, once therapeutic testing of on actual patients begins.
The job of keeping patients engaged and in a trial typically falls to the site coordinator, whose main responsibility is seeing that the patient’s portion of the research protocol is carried out. As you can imagine this task is complex and difficult as it requires the coordinator to not only know the precise status of each participant, but also to be able to quickly take the appropriate steps when patients get off track with their appointment schedules.
While, as a site coordinator, you may be able to use retention management software programs to take on some of the work of coordinating and structuring sequences of tasks, it is still your job ensure that each particular patient actually attends all of their appointments within the visit windows. And, with clinical study enrollments ranging from the tens to hundreds, you can imagine the potential complexity of such a calendar.
Driving home that idea, Joshua D. Grilland Jason Karlawish note in their 2010 article that study size seems to correlate with retention rates – larger studies experience the lowest retention rates and small studies have higher rates. These statistics are not terribly surprising, as it is fairly normal to eventually fail to add a personal touch when you’re trying to keep hundreds of patients on track and engaged using manual outreach.
The process of setting up and running clinical trials is obviously complex - and it becomes more complex as the length and size of the trial increases. However, there are many opportunities to create solutions. Which is where you come in.
Round out your knowledge by getting the patient experience point of view below and then dive in and get started on your app.
Patient experience and opportunities
In the past, being involved in a clinical trial often meant reading lots of dense medical text to learn about the study and how it might impact your life. It meant long visits that left you feeling exhausted or many short visits (potentially leading to increased time away from work or traveling). It meant trying to remember when to take your medications, what to track, and who to report it to. In short, it was a decent amount of work.
In her guest blog post, Meet Subject #0008: A Patient Perspective On Clinical Trials, Jeri Burtchell says that to become more patient-centric, researchers need to “treat subjects like human beings and conduct [studies] in such a way as to have the least impact on [participants’] everyday lives.”
Luckily, with the advancement of technology (and Health IT) there are a multitude of opportunities for advancing patient engagement and making participating in trials more convenient, manageable, and – maybe – even enjoyable.
Let’s pretend for a moment that you are enrolled in a clinical trial. How might you use an app to increase your engagement?
For instance, a software app might focus on helping you understand more about the clinical trial experience and how it will impact your life on a daily basis. It could help educate you about the disease and treatment being studied – not to mention give specifics about the tests and exams that will be performed.
An app might help you to schedule your day by providing information about how long a specific test or visits is expected to take and whether patients experience pain or fatigued after visits.
And let’s face it, you’re busy, so keeping track of scheduled visits, medication reminders, and other notifications via an easy-to-use app (instead of your current method of post-it notes) may not only help you, but also help assure adherence to the protocol. Apps and tools could be used to help find and book travel, lodging and restaurant options for those far away visits.
And, perhaps most importantly, you might look to an app to gain personal support – helping you to quickly address important questions and allow you to feel more comfortable, valued and committed to the trial.
To sum this up, we might say there are a few general things “human beings” would want in a clinical trial – aside from care – such as: information, personal interaction, efficiency, and comfort.
So, what do you think? How can you use Health IT to help patients stay engaged in clinical trials while humanizing the patient experience?
Ready to start?
Check out the Ideas & APIs page for a few ideas of ways to get started on your app.