Article by Guest Blogger Kathy Perez
In this age of smart phones, cloud-based voice helpers and all things “Google” the public and medical profession have many ways to find a clinical trial. The most comprehensive listing of clinical trials in the world can be found at www.clinicaltrials.gov but when you get to that site it’s often difficult to navigate and understand, even for those of us in the research field and biopharmaceutical industry. Imagine a patient or caregiver who has received an unexpected diagnosis and is searching for information. “Frustrating,” “confusing” and “not helpful” may best describe their first impression.
To be most patient centered, researchers and industry must consider the how and where information is available for clinical trials and treatments. It’s important to provide high quality information in a way that can be easily understood while helping to direct patients and their caregivers to centers of excellence for additional consultation. If we don’t take the lead for our areas of interest, some other information source will likely fill the void.
Important Considerations for Clinical Trial Awareness:
- Each of our organizations should consider a “wiki” page for the compound or treatment being investigated. Is someone in your organization monitoring associated and relevant Wikipedia content?
- If “newly diagnosed xyz” is searched, what is the search result? Where does that information lead the searcher? Is the information helpful/harmful?
- How buried is the trial in the www.clinicaltrial.gov ocean of information? Would you or your family be able to navigate to the right information to find a center of excellence or an expert?
- Would your trial benefit from a stand-alone digital presence? Would a social media presence be helpful? Knowing how often the public is searching for information for patients seeking treatments or trials in a specific disease area provides good insight into whether or not a digital presence is important to patients and caregivers.
These questions are relevant and timely for researchers and industry. Enrolling clinical trials is time intensive and costly, speeding or slowing new treatments being researched to potentially be available to help more patients. The more transparent clinical trial information is to patients and their families, the more informed questions they can ask their healthcare providers.
There are many ways to find medical information, but they are not all equal. We place great trust in our medical professionals to give us the best information, but they cannot be expected to keep track of every new biomarker and treatment option being investigated. They too turn to “Google” hoping to find updated and understandable information to share with patients. We should always consider how best to help provide good information to the medical community in the forums they are using! It’s likely they might say be the one asking, “Hey Alexa, find me a clinical trial…..”
Kathy Perez is a Patient and Medical Professional Advocacy Consultant