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In this interview, Katie Mazuk, Global Head Investigator & Patient Engagement, will discuss her perspectives on improving patient connectivity.
The biopharmaceutical industry is starting to tackle patient connectivity, as the number of clinical trials continues to expand. However, current trial matching tools (i.e., regulatory listings) and protocol inclusion/exclusion criteria specificity make it challenging for researchers, investigators, patients, and caregivers to match the best-fit study. In this interview, Katie Mazuk, Global Head Investigator & Patient Engagement, will discuss her perspectives on improving patient connectivity.
Moe Alsumidaie: Why is increasing your ability to amplify patient and investigative voices in clinical trials so important? Why does Janssen see this as a priority?
Katie Mazuk: Our philosophy at Janssen is, “Better Trials Made Together,” which consists of Janssen, patients, and our clinical research sites working together to create better clinical trials. This could apply for a specific clinical trial or the broader clinical trial experience. We fundamentally believe that if we involve patients and healthcare professionals early and often in the study design process and prioritize communication, it can ultimately result in a better trial. More patients and the best clinical research sites want to participate in better-designed studies, a path that can possibly result in faster access to better medications. The clinical trial base is very competitive, and there are more trials than there are patients participating. So, our priority is to create these studies collaboratively. In certain disease areas, when you get patients and healthcare professionals in the room, they will be very honest with you and let you know if a trial would be hard to recruit for. They will raise awareness about gaps, such as identifying patient populations that are not served by trial investigators. We can identify those needs upfront versus identifying them after the trial has begun. We are supporting clinical research sites to amplify their outreach in their local communities to raise awareness on clinical trials and help connect patients and caregivers to trials that might be right for them.
MA: What are the biggest challenges regarding getting patients and investigators more engaged in studies both during the trial itself and afterward? What is Janssen doing to address these challenges through its internal initiatives?
KM: A couple of years ago, the challenge would have been around correctly identifying the elements of patient engagement in clinical trials because it was still a new concept. Now that patient engagement has matured, we can customize approaches and develop unique strategies that each trial, investigator, caregiver, patient, or even country needs. We can expand these strategies in patient communities and not limit them to healthcare professionals. We are also embracing more modern ways of outreach, such as digital and social media, which is focused around improving access and patient engagement in clinical trials. During the trial, we are looking for ways to support healthcare professionals with tools, information, and resources which they can use directly with their patients. We also want to return data to patients during trial participation. After the trial, we create patient communities, send results back to those who participated and ask for feedback.
MA: Can you elaborate on how Janssen is connecting patients and HCPs to studies?
KM: The primary way Janssen has been doing that is through raising awareness about clinical trials by showing people what trials are available. It is hard to find information on clinical trials, for example, which trials are available and how to connect patients to local sites. The advantage with social media is that you can reach people in their geography. You can show them trials that are close to them. In the past, advertising was more general, and someone may be interested in the featured study, but the site might not be close to them.
MA: What is Janssen currently doing to improve patient engagement in studies? How is this different or similar to the approach that others in the industry are taking?
KM: One example is that we heard a theme across patient groups, investigators, and site staff that having conversations with patients about clinical trials is very difficult. Doctors and nurses would tell us it was hard to bring up these conversations with patients, and the patients were telling us that their doctors do not talk to them about clinical trials or if they do, it is convoluted and incomprehensible. So, we tapped into our Johnson & Johnson Health and Wellness Group to work on a validated methodology to help have better clinical trial conversations using behavioral science. Our plan is to develop tools from a patient's perspective to empower and enable patients to have better discussions with their healthcare professionals.
MA: In a perfect world, how would clinical trials operate differently or better than they do now?
KM: The critical thing is that we share the importance of clinical trials repeatedly with patients and caregivers. Patients and caregivers want the clinical trial to fit seamlessly into their lives, and often it is not possible, or it is a hefty challenge. For instance, study participation can be burdensome from a transportation perspective, and it can be difficult because patients have to see another doctor and keep all sorts of records. Ultimately, the clinical trial experience will be transformed when we can integrate it into a part of general health care where it is convenient for patients and caregivers to participate. The challenge is to try and make studies simpler. The question is how we can integrate studies into people's lives so that more people can participate, have broader access and ultimately, we can get patients the medicines they need faster.
Moe Alsumidaie, MBA, MSF is Chief Data Scientist at Annex Clinical, and Editorial Advisory Board member for and regular contributor to Applied Clinical Trials.