Francesca Dominianni - Apr 19, 2019

Amazon, Uber, Yelp...Why Not Clinical Trials?

So you call an Uber, you see your driver has a low rating, do you really want to get in the car or are you now feeling skeptical? Or picture this- you are going on a weekend trip with your friends you haven’t seen in years and you want to pick the best restaurants in the area. If you’re like me, you probably turn to yelp and search local restaurants. Now you have a list of hundreds of restaurants and you are slightly overwhelmed- do you pick the one with 2 stars or the one with 4.5 stars?


So you may be wondering where do clinical trials come into play? Well you see, ratings and reviews affect everyday decisions like where you eat or what new smartwatch you decide to purchase on Amazon. People’s voice and opinions impact our choices on a daily basis and rating clinical trial experience is just as, if not more important than rating other experiences. These ratings act in two different ways:

  1. They help future visitors make choices or in some cases narrow down their choices 
  2. They help the seller or company improve their products or services based on feedback.  
In a world where people rely so heavily on the feedback of others to make even the most basic of decisions, why are we not sharing our clinical trial experiences?- or maybe we are, just not on the right platform to help others.

So, Why Does Your Voice Matter?


Choosing to participate in clinical research is a very personal decision and what you choose to publicly share about it is up to you. That being said, your experiences can pave the way for many future clinical research patients. In any situation, being honest and sharing your opinions is expected and accepted. Why should clinical research be any different? Being open and honest about all your experiences can help future patients, as well as research sites, improve their facilities. At the end of the day, it’s called research; it’s meant to grow and develop and improve. Studies are created to be learned from. Without reviews, the medicine may still progress due to stats and observations of the study, but the patient experience remains stagnant.


Your voice is just that--- yours! Only you can speak about the experience that YOU had. Although there may be hundreds of patients (in phase I studies) to thousands by the time a study reached phase IV (https://www.fda.gov/forpatients/approvals/drugs/ucm405622.htm). No two patient experiences may be the same. That is why it is so important to review your site experience so that future patients searching for a trial have many different perspectives to look at. It is rare that someone will look at just one review and believe it. The more reviews something has, the more credible the ratings are.


Clinical research can be a daunting task for those looking for all available options. Seeing reviews and ratings from real-life patients can help these difficult decisions become even slightly easier. After all, don’t we look at reviews before we purchase even the smallest of things? Why not use reviews to make bigger decisions as well? According to Forbes.com, 90% of customers read reviews before visiting a business and online reviews have been shown to impact purchase decisions by 67.7%. With more than half of people being impacted by reviews you can now see just how powerful your voice is.


The Role of Patient Voice in Medicine


Medicine has always been a fascinating thing, extremely innovative and ever-changing. Clinical research is at the forefront of this innovation, it has the potential to change medicine for everyone. As with any other medical procedure, patient voice is so important, it is a patient’s ability to have a say and ask any questions they may have. A blog published by the Patient-Centered Outcomes Research Institute stated that “The patient voice is so critical. Providers and healthcare systems can best help patients in their times of need when patients, as well as their caregivers, are fully included in decision making”. If the voice of a patient is lost, they may not have a good experience which is why making sure that patients have an open dialogue with all providers is of utmost importance.


Patient voice is becoming more important and more relevant in medicine. Medicine has evolved to become more than just “fixing” or “treating” a patient to actually listening to a patient’s needs. In medicine, nothing is one-size-fits-all and each patient has different needs and desires. Along with listening to patients needs, there has also been a change to make sure that patients are more informed in all the decisions that they make. Since clinical trial patients are voluntarily testing new drugs, devices, or procedures- it is a facilities job to make sure patients are well informed and comfortable during their experience.


Why or How Does Sharing Your Voice on TrialScout Help Patients?


There have been a few times on Facebook or other forms of social media that I have seen posts or heard about patients clinical trial journeys, and while that is great and can help others and help the individual to gain a support system, it isn’t necessarily the best way to reach the community that really needs it. Over five million people have or are currently participating in clinical research, but there are so many more people looking. Ratings on a platform such as TrialScout help these patients make the best choice possible. TrialScout is the community that needs to hear your voice. Much like people turn to yelp to determine what restaurants to visit on a weekend trip, patients look to TrialScout to help them make their research decisions.


Whether it be Amazon, a restaurant, ride-share or clinical trials your voice really does matter. Your ratings have the potential to change someone's decision or maybe be just the small bit of persuasion they needed to participate in a clinical trial. It’s often easy to think “oh, it’s just one opinion, it won’t really matter”, but it does matter; sometimes that one opinion can change a person's entire perspective. You were given a voice for a reason. Now is the time to use your voice, share your experiences and help others.

Visit www.TrialScout.com to share your clinical trial experience. 

 

Sources:

https://qioprogram.org/qionews/articles/giving-patients-voice-care-decisions

https://journals.lww.com/cancernursingonline/Fulltext/2017/03000/The_Voices_of_Patients___Do_They_Really_Matter_.1.aspx

Written by Francesca Dominianni

Francesca Dominianni is a Marketing and Strategy Intern at TrialScout. She is a full-time undergraduate student at the University at Buffalo studying both Marketing and Operations and Supply Chain Management. Outside of the classroom she holds leadership positions for both her sorority and the Inter-Greek Council. In her free time, she enjoys spending time with her friends and family.