As part of our patient advocacy efforts, at FindMeCure we are dedicated to creating a bridge between patients and the world of clinical research. This includes spreading clinical trial awareness, connecting patients to the trials they are interested in but also speaking up about the issues in the clinical research industry. 

Low levels of trust in Pharma companies combined with a lack of sufficient understanding of the clinical trial process, broken communication between all parties involved, and the complicated language of medical research are the ingredients to a lot of skepticism on the part of patients. 

This is very understandable, considering the kind of obstacles they run into as soon as they begin thinking of alternatives to their current treatment. Today let’s take a look at some of the barriers to trial participation and the issues that break the trust patients have in research. 

Low clinical trial awareness 

If you are a patient who is not satisfied with their current treatment, either because of severe side effects or because it doesn’t sufficiently relieve your symptoms, looking for an alternative can prove to be a challenge. 

According to a study we conducted recently among patients who apply for clinical trial through our search platform, only 16.1% of them have discussed trials as an option with their clinician. Most doctors are not aware of clinical trials conducted outside of their facility and most patients don’t even know this is an option they can ask for. 

A recent survey among patients shows that clinical trial awareness is improving due to Covid-19 – 62% of patients from the UK, USA, Germany, Italy, and Japan report that the current pandemic made them more aware of clinical research. Despite this positive trend, there are many challenges that need to be addressed before a patient even gets enrolled in a study. 

We created our patient-facing search platform for clinical trials as a response to public clinical trial registers where data about past, ongoing and not yet recruiting studies is available but presented in an unfriendly and confusing way for patients.  

Difficulty getting connected to the study team

FindMeCure makes the application process much easier for the patient. We send an automatic application to the study team as soon as a patient enters their info (name, condition, contact details) into our system. 

There is another trouble here, though – missing contact information. Sometimes public clinical trial registers (where we get our data from) do not include the contact details of the investigator or only include a phone number typically connected to the call center of the sponsor company. 

This makes getting in touch with the study team very difficult if not impossible. Searching for contact information can be challenging even when the site of application (the hospital which the patient can visit for study-related procedures) can be found online. 

Outdated contact details are another issue which slows down communication and makes connecting patient and study coordinator harder. Sometimes, however, when we receive no reply from the study team for weeks on end after repeated reminders we cannot really tell whether the contact details listed in the register are outdated or something else got in the way.  

Lack of clear communication and transparency    

We recently received a message from someone whose spouse had taken part in a study, benefitted from the treatment, yet received no further support. 

We have written about this in our blog post “What Happens After The Trial Is Over?”. The post-trial care you are entitled to, although subject to regulations, depends on the specific trial protocol and varies from study to study. 

In some cases, even if you as a participant personally benefitted from the drug in development, the company that produced it may deny you post-trial access if it found significant health risks linked to the drug. 

Of course, this should always be clearly communicated with participants before, during, and after the trial. It is stated in the clinical trial protocol if and under which circumstances a participant is entitled to access the treatment after the trial is over. You should be informed about this before signing the Informed Consent form and discuss any concerns you have with the trial team. 

Another issue patients encounter is the lack of information about what happened. Although companies should publish the results of their trial, this often takes years after the trial has been completed. During this time many patients don’t get answers to their questions:

Was the trial successful?
Does the drug work?
Will the treatment get FDA approval?
Will I be able to access the drug on the market?

It’s this lack of clear, transparent communication that leads to the mistrust of many patients in clinical research and the Pharma industry as a whole. 

We are addressing these issues because as professionals in this line of work, we believe we can and should do better by the patients who rely on us. It’s a long process and we can already see the fruits of our advocacy efforts – many companies have improved their patient support over the years. Where before we were only receiving automatic replies, we now receive relevant information that helps us connect the patients. 

There is still much room for improvement and at FineMeCure we believe that by speaking up and providing support and expertise we can make a big change for the better.