CWWeekly presents this feature as a spotlight on issues faced by executives in clinical research. This week, writer Karyn Korieth spoke with Zikria Syed, co-founder and chief executive officer of VitalTrax, which has developed a clinical trial network called PatientWing that makes it easier for patients to find and enroll in clinical trials.

Q: The industry is starting to appreciate the importance of patient centricity, but there is little consensus about what it means. How do you define patient centricity?

A: The industry is still trying to figure out what patient centricity means. Many times, when people in the industry talk about patient centricity, they mean engaging patients in a conversation about clinical research. But we need to go beyond that. For that, we can take a cue from other industries, which want to service the customer. The patient is the customer, even in a clinical trial. Service begins with helping patients find clinical trials, engaging them, making it easy to participate, keeping them informed and allowing them to give feedback on their experience. 

Today in clinical research, patients are treated as subjects, not partners. When they participate in a trial, they don’t know much about the trial beyond their own participation. For example, they are not informed whether the drug was approved or not and have to seek out that information on sites like ClinicalTrials.gov or scour industry publications. They deserve to know. Providing that information directly to patients can significantly improve their experience in the clinical trial. Technology can be used to create a secure channel to enable that communication. 

Q: While patient-centric drug development has become a buzzword, the industry has been slow to implement processes and programs that achieve this goal. What can be done to drive adoption of patient centricity in clinical research?

A: It requires a longer-term strategy of informing and empowering patients then enabling them to participate in clinical trials. 

Given the pressures the industry is under to bring new treatments to market, pharma companies and CROs are focused on recruiting for their current trials and not as focused on the longer-term approach to expand the population of patients willing to participate in clinical trials. With the focus on current trials, they want to use databases to seek out the patients, find them, talk to them and bring them into the trial. What they are doing is like direct marketing. This is a very tactical solution as opposed to informing, educating and empowering patients to make their own decisions. A strategic solution gives patients the power and the ability to easily find clinical trials and enroll in them. No one ultimately knows for sure what will work, but I think empowering patients is where the industry needs to go to grow the patient population in clinical trials.

Q: Many studies have found that online clinical trial registries are difficult to navigate and don’t provide the information patients want before considering clinical trial participation. How can this issue be addressed?

A: The industry tends to be extremely risk averse. Pharma companies are very cautious when describing clinical trials, so they do a poor job of explaining how a treatment could benefit patients. Clinical trial listings often include technical jargon and trial procedures, but not why they are doing the research and how it brings something new that improves on existing treatments. It’s a deep, systemic problem in the industry. It is left to the sites to inform patients about the research study. But many times, the sites are not the ones sponsoring the trial and are the vehicle for executing the trial, so they can’t really talk about it the same way the sponsors could.

I am hopeful that a more open, crowdsourcing-type model will enable better patient engagement where both sides can communicate more openly. Technology has revolutionized many industries. If you think about Airbnb, it’s all crowdsourcing. In clinical research, while it is difficult to adopt new technologies, these types of ideas hold some of the biggest promise. 

Our vision is to create a database of clinical trial listings and provide a crowdsourcing model that encourages sites and sponsors to update the information and publish the information that is helpful to patients. In addition to basic trial information such as the number of visits, duration and the drug, they could explain what to expect in the trial and why patients should participate. This gives sponsors a great vehicle to publicize their trials. Similarly, sites can opt in and promote themselves, since sites are interested in being known in the local region as somebody who conducts clinical research. Since it’s a completely open network, anybody can go in and see the information. Patients can type in a condition and a geography and get a list of trials. If they clicked on a trial, it would give them more information about the trial and allow them to apply online. 

It’s about empowering people to share their information. We believe it encourages greater sharing of information when everybody can see it. People maintain their profiles on LinkedIn and Facebook because others can see it. It’s a more sustainable, meaningful model. I don’t think anyone would disagree that the industry needs to be more strategic in recruiting patients. The timing is right for change in the industry.