You are part of a booming trend.
As sheltering-in has become the default precaution for millions of people coping with the COVID-19 pandemic, staying at home is affecting everything from work and play to, most critically, healthcare. In order to keep the virus from spreading, medicine has moved from the exam room to your living room. Everything from telehealth consultations to virtual therapy have become the new normal.
The idea of remote clinical trials began gaining steam around 2012, but has never taken off in the way that was imagined. Now? Clinical trial participation is being reimagined for an all-remote world.
Remote trials have the promise to accelerate recruitment, improve retention, and deliver more consistent data faster, which is essential in this new landscape.
So, what can you do to make the experience a meaningful one both for the researchers and for yourself?
The more you know
At the heart of your trial is data — the information you are recording and sharing with the study’s research team. The more useful information you can report, the deeper the trial’s findings can go. To provide meaningful information, make sure you understand the objectives of what you’re being asked to do at every step. The best approach is: ask lots of questions and then ask some more. Write down your questions as they occur to you and communicate them with your trial coordinator. No question is too small and can be essential in clarifying expectations.
Your trial team is eager to know how you’re feeling throughout the course of the study. Due to mandated shelter-in-place policies, many people are coping with the loss of their daily routines and structure. It can be hard to remember what day and time things happened, or how severe they were. It will be helpful for you to keep a diary, either on paper or on your computer or phone. Be prepared to jot things down the moment they happen.
Remote is real, but different
Though the clinical objectives of your remote trial are not different from an in-person one, the methods are defined by location and technology. Managing technology is essential to successful participation — and to keeping you safe.
Staying organized is important. Your trial team may provide you with electronic resources to track and manage your health data. Otherwise, keep all of your trial-related information — your diary entries, your written observations and questions — in a digital folder that can only be accessed by you and the trial team. Regardless of where and how it is stored, you should not share any part of this information in unencrypted emails or social media and should not post it to a blog. Not only would that violate the trial’s rules for confidentiality, you could expose yourself to security hacks. Never share any personal medical information with anyone who doesn’t have authorization.
Live your life
Your trial commitment is serious. You have to dedicate time to being aware of, recording, and reporting your health like never before. Make sure, as much as possible, to keep as much of your regular life going in these unusual times. Not only will it make your trial participation on track, it will help keep you grounded, and that is vital.
This blog is intended to be informational in nature. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment.
If you have any questions or concerns, please talk to your doctor. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.