We recently hosted our first Phireside webinar, where I had the privilege of speaking with Christine Von Raesfeld, a patient and the founder/CEO of People with Empathy. During the webinar, we discussed the real-world challenges that clinical trial participants face, as well as the types of improvements that can make or break their experience.
I met Christine at a conference when I was just seven months into my career in the clinical trial industry. During one of the sessions, Christine asked a very insightful question about patient engagement and whether anyone was taking into consideration the patient’s perspective. After the session, I introduced myself and we had a conversation about her experience in clinical trials, her mission, and why she was attending these conferences.
We became friends and have kept in contact over the years. She is so passionate, engaging, and insightful (dare I say, disruptive?) that I was thrilled to have the opportunity to chat with her during our webinar as we delved into some interesting topics – check out the snippets below:
Dave: Christine, you have a lot of first-hand experience participating in clinical trials. What are some of the more challenging or burdensome tasks involved in a clinical trial?
Christine: I am an undiagnosed rare disease patient. In my experience, I’ve had limited options in the past due to my HMO’s lack of emphasis on clinical trials. When your condition gets to be severe, it drives the need to seek options. Over the years, I’ve been involved in many trials, but there are a lot of difficulties, even just knowing where to go to look. I joined an organization that finds clinical trials, which has been very helpful.
Another challenge was the difficulty in getting places. I lost my driver’s license for several years because of health issues. I was in a study at that time but couldn’t get to where I needed to be. More recently, I participated in a year-long longitudinal study where I did have the ability to drive. However, the cost of getting to and from, especially with gas prices these days, was significant.
When we think about clinical trials, we must remember that the participant gives us everything. We should make it as easy as possible for them to participate. A lot of these problems can be fixed through conversations and collaboration.
Dave: That reminds me of the first time we ever talked, and I learned something about you and the benefit of ClinCard in general. There were aspects of your situation that I had never considered before. I’m not sure if you remember what I’m referring to…
Christine: I do. We talked a lot about democratizing the process and how we pay patients for their involvement in these studies. I brought up that I have been on Medicare and how that poses a challenge due to financial guidelines and regulations. Having money put into my account puts me at risk of losing my support. How do you provide that financial support without jeopardizing the patient? It’s important to think about and understand the situation people are in.
Dave: Exactly! And that’s why the patient-neutral spend initiative is so important as it aims to eliminate barriers for all trial participants, regardless of their socio-economic status. So how do sponsors actually identify these barriers and meet patients’ individual needs?
Christine: It’s important for sponsors and patients alike to be aware of what these barriers actually are. A few years ago, when I asked people at conferences how they were involved with patients, at that time they would say, “Oh, that’s up to the sponsors.” Now that is changing. How do we more actively involve patients in research? It’s easily answered: engage communities and patients to hear directly from them what their challenges and needs are.
Dave: And these conversations are more than just learning about patient challenges relating to finances or logistics. They’re also important in establishing personal connections.
Christine: Healthcare is about connecting with people in their darkest moments. Getting to know a person, connecting with them, and forming a relationship with them helps keep you motivated throughout a study. For example, when there is staff turnover at a research site, as a participant, you lose that connection you had built which can impact willingness to continue participation, putting the study at risk. In fact, I almost stopped participating in the year-long longitudinal study after 8 or 9 months because my study coordinator changed. It’s the relationship you build with these coordinators that you really need when involved in a clinical trial.
Dave: So, Christine, knowing we have all these challenges,what would you like to see changed first? What would you like to see offered to the participants?
Christine: I would reframe the entire idea of clinical trials. I would make sure that patients understand that trials should not just be seen as a last-ditch effort. It is often a viable option for care that can have real benefits not just personally, but across entire populations. What are we telling patients when we are dragging them into this process but not sharing the benefits of what they are doing? We have to think about clinical trials in a more empathetic way.
It was a pleasure discussing important issues with Christine. As she discussed throughout our conversation, in order to truly understand the participant’s journey and execute a patient-centric clinical trial, we need to hear from patients themselves. This means sites, sponsors, CROs and vendors incorporating direct patient feedback into their initiatives – whether designing a protocol, considering reimbursement amounts and methods, building patient-facing platforms and more. As an industry, I feel that we are having the right conversations – now we need to ensure we take the appropriate steps to ensure a better future for clinical trials.
