Improving How We Search for Clinical Trials

When I first delved into learning about clinical trials for bladder cancer, I was under immense duress. The standard chemotherapy was not shrinking my husband Ahmad’s tumors and remaining options were few at that moment in late 2013.

Nobody seemed to help much with searching for a trial

I heard a lot about clinical trials but finding one seemed complicated and there didn’t seem to be anyone in the medical system who did this on behalf of patients. Certainly, doctors were aware of current trials but sometimes they really were only most familiar with those at their institutions.

The reality is that doctors simply don’t have time to conduct deep-dive searches for trials for every patient. That was one of many surprises for me.

I decided to do it myself

And so, I decided to dive into the searching myself. I was quickly overwhelmed. The main site for information about ongoing and forthcoming clinical trials is www.clinicaltrials.gov and is managed by the National Institutes of Health (NIH). It is an American-based site but it is the largest public database of its kind in the world.

I was quickly overwhelmed

I was swiftly uncertain of how to search for what I needed. Clinical trials related to bladder cancer used a variety of terms: bladder cancer, urothelial cancer, transitional cell carcinoma, solid tumors, neoplasms, and so on. I was constantly uncertain of whether I was generating the most comprehensive results. For example, would a search using “bladder cancer” exclude a study listed as “urothelial cancer”? I would think such terms would be cross referenced but I didn’t know if they were and couldn’t seem to pin down an answer.

And so, while it was helpful in some ways, it was also an exercise in frustration at a time when I was already so stressed.

Intended for researchers but used by everyone

As I understand it, the site was created with researchers in mind. Perhaps they find it more user-friendly than I did. But the practical reality is that the more enterprising patients and caregivers use the site a lot in their quest to find new or emerging options. It is a tool that can help them start conversations with doctors about possible options.

Public input was due March 14 on how to improve the site

On December 30, the National Library of Medicine (part of the NIH) released a request for public input by March 14, 2020 on ways to improve the site. You can find record of the request here.

A more user-friendly tool for all

The voices of patient and caregivers are becoming more important and more valued in medicine. I believe the more patients and caregivers can provide their input, the more hope there is that the site will become a more user-friendly tool for us all.