Patient Navigators: Your Guide Through the Clinical Trial Journey
Featuring: Madeleine Carrier, PharmD, Dennis Akkaya
In short
Patient navigators — trained specialists separate from your medical team — can help you find, qualify for, and enroll in clinical trials that fit your specific situation, including if you are not at a major cancer center. Madeleine Carrier, PharmD, and Dennis Akkaya of myTomorrows walk through the common barriers patients face (scattered records, unfamiliar eligibility tests, slow site responses) and show how navigators help remove them. Clinical trials are presented not as a last resort but as a real option worth exploring at any stage of treatment.
- •Ask your doctor about clinical trials early — not only after standard treatments have stopped working.
- •A patient navigator can pre-screen you, gather your medical records, and handle communication with trial sites so you don't have to do it alone.
- •Clinical trials often cover the cost of specialized testing, such as genomic sequencing, that you might not otherwise receive.
- •If you are not at an academic medical center, a navigation service like myTomorrows can connect you with trial options your local physician may not know about or have time to research.
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Brad Power July 3, 2024 “The goal of the patient navigator is to reduce the complexity surrounding clinical trials, guiding patients seamlessly from their initial intake call through to enrollment. ” – Dennis Akkaya “From attending conferences and establishing partnerships with patient advocacy groups, we're seeing the landscape change. This is a really important time.
Meeting Summary
Patients and caregivers often perceive clinical trials as risky and unpredictable compared to standard treatment. Many fear being treated like “research subjects” in an experiment, without knowing that there should be no compromise on the standard of care in a clinical trial environment. Additionally, clinical trials often provide comprehensive testing at no cost to the patient, offering greater insight into treatment effects.
Madeleine Carrier, a patient navigator at myTomorrows, and Dennis Akkaya, Chief Commercial Officer at myTomorrows, are uniquely qualified to lead a discussion about how patients and caregivers can navigate clinical trials. myTomorrows is a company which helps patients discover and access treatments, bridging the gap between those searching for all possible options and the BioPharma companies who develop them.
Why should you consider a clinical trial?
•Extra options: Clinical trials are often used when you have exhausted all standard of care treatments. However, clinical trials should be considered upfront and throughout the whole process of treatment selection, as one of the options that are available and should be prioritized.
•Access: By choosing a clinical trial, you may be trying the next therapy in the standard of care much sooner than you would have otherwise. In addition to getting access to medications that are additional options, you can also access options in timing and drug combinations. What are the challenges that you can face when trying to access clinical trials?
•Awareness: Not knowing that there are clinical trial options.
•Data Availability: Assembling and sharing medical records , essential for selecting treatments and qualifying for trials. They are often scattered across various healthcare providers.
•Testing Requirements : Enrollment in clinical trials frequently requires specific tests, such as genomic sequencing, which you may not have had.
•Complex Trial Matching : Not being aware of your options beyond standard care - clinical trials are not seen as standard considerations when developing treatment plans. The abundance of clinical trial options can make selection a daunting process. Factors to consider include eligibility criteria and the number of required visits.
•Travel Considerations : Your ability and willingness to travel to trial sites can vary, impacting your ability to participate.
•Enrollment Process : After selecting a clinical trial, you must communicate with multiple entities to complete enrollment, adding to the complexity; uncertainty about who to contact and the information required; you may get a slow response or no response from the clinical trial site.
•Managing Expectations : You should understand the probabilities of expected outcomes; watch out for a false hope that a clinical trial will deliver an exceptional outcome. How can patient navigators assist you in your cancer treatment journey?
•Address any barriers you face in understanding your options
•Explain the clinical trials process and how to get enrolled
•Match you with a clinical trial
•Prescreen you to see whether you will qualify for a clinical trial
•Enroll you in a clinical trial, including helping you collect medical records and sending them to the research site
•Describe the different roles of your medical team members and discuss how relationships with them work, improve your communication with your medical team What can you do to learn more about patient navigation services?
•See myTomorrows’ service related to clinical trials and the role of patient navigators.
•Read or watch our discussion with Selin Kurnaz of Massive Bio about finding your best clinical trial. How can you ensure that you understand your clinical trial options and improve your access to them?
•Ask your provider about prioritizing clinical trials. Consider clinical trials not as your last option, but as your first option.
•Share with other patients and caregivers the advantages of a more proactive consideration of clinical trials.
•See our discussion with Kevin Freiert of Salem Oaks on educating patients and caregivers about clinical trials . The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS patients, clinical trials, trials, patient navigators, physicians, options, site, question, Madeleine, dennis, referrals, journey, companies, report, travel, brad, screening, institution, study, expanded SPEAKERS Dennis Akkaya (64%), Madeleine Carrier (25%), Brad Power (6%), David Plunkett (2%), Rob Weker (2%), Roger Royse (1%) QUESTIONS SUBMITTED VIA CHAT Allen Morris, David Plunkett, Erika Hanson Brown, Ryan Moon, Robert Weker, Kuldip Ahluwalia, Cheryl Middleton, Clifford Reid, Nusantara SUMMARY Patient navigators can play a crucial role in guiding patients through their clinical trial journey, providing personalized support, understanding the patient's journey, and addressing concerns. They can help patients in matching them with clinical trials, raising awareness about trial options, and improving the patient experience. Ideally there should be a dedicated point of contact, medical training, language support, and early education to build trust and facilitate the referral process. Patients should be educated about clinical trial options earlier in the treatment process to make informed decisions. OUTLINE Introductions.
•Dennis Akkaya and Madeleine Carrier introduced themselves and discussed patient navigation and clinical trial access at myTomorrows. Patient navigators' role in helping patients find and access relevant trials.
•Patients can schedule a call with a patient navigator to learn about clinical trials tailored to their medical profile.
•Patient navigators help foster shared decision-making between patients and physicians, potentially leading to enrollment in clinical trials.
•Patient navigators provide dedicated support from initial contact, answering questions and addressing concerns.
•Patient navigators explain clinical trial concepts, address eligibility criteria, and build trust throughout the journey. A case example of patient navigation for a cancer clinical trial, emphasizing personalized support and trust.
•A patient was aware of a specific clinical trial for diffuse midline glioma and reached out for support in understanding the enrollment process.
•Madeleine Carrier prov provided pre-screening and addressed concerns about the study design and placebo arm, facilitating the patient's referral to the site.
•Patient navigators assist cancer patients throughout the treatment journey, providing personalized support and connecting them with relevant resources. Patient navigation for clinical trials, including intake process, platform, and funding models.
•A systematic approach ensures seamless transition from exploration to potential engagement with clinical trial sites.
•Pharmaceutical companies prefer to work with patient navigators, as they provide a more comprehensive view of trial options for patients.
•A clinical trials navigation service helps patients by providing information on all their options, without promoting any particular company. Genetic testing and clinical trials for cancer patients, with insights on patient knowledge and awareness.
•Patients often lack knowledge on genetic testing for eligibility criteria in clinical trials.
•Patients at community hospitals may lack knowledge of clinical trial options, while those at academic institutions have more awareness but may need help enrolling. Barriers to clinical trial participation and ways to overcome them.
•Patients are often unaware of clinical trial options beyond standard care.
•Physicians are stretched thin, unable to keep up with the latest research.
•Patients receive personalized guidance through patient navigators, reducing confusion and uncertainty.
•Navigation services provide a streamlined process for sites, with organized referrals and compliant documentation. Clinical trial enrollment, patient eligibility, and informed decision-making.
•Madeleine Carrier discusses challenges in ensuring patients qualify for clinical trials, including distance and resource allocation.
•She emphasizes the importance of considering clinical trials upfront and throughout the treatment process. Clinical trials, patient advocacy, and access to treatments.
•Speakers discuss the importance of educating patients about clinical trials as an option for treatment.
•Patient shares personal experience of benefiting from enrolling in a clinical trial earlier in the treatment process.
•Madeleine Carrier mentions cross-border referrals for clinical trials, acknowledging complexities such as visas, work permits, and consent.
•Roger Royse asks about trials outside the US, citing the UK's recent RNA vaccine trial launch and the need for coordination and information sharing. Clinical trial navigation and personalized search reports for patients.
•Patients receive personalized support from dedicated patient navigators.
•Patients can reach out to the team via email or schedule another call for more information after the intake call. Clinical trials, expanded access, and patient-physician relationships.
•Madeleine Carrier emphasizes the importance of patient-physician relationships in expanded access pathways.
•Patients can involve their treating physicians in the treatment search process at various stages.
•Patients can try expanded access to drugs if they don't fit trial parameters. Clinical trial matching platform, AI technology, and patient experience.
•Madeleine Carrier emphasizes the importance of supporting referring physicians and patients, not just academic centers.
•She positions the company as a partner that prioritizes patient care and detail in clinical trial matching.
•She emphasizes the importance of patient experience and satisfaction in clinical trial matching, and believes AI technology will play a crucial role in improving the process.
•She predicts that within a couple of years, mature business models will emerge that can provide a seamless and satisfying experience for patients considering clinical trials.
Full transcript
Brad Power A quick little couple housekeeping before we get started. First is that this is not medical advice. This is for information purposes only. You should take the information you get from a discussion like this to your medical team. We are a patient led community and we would appreciate any donations that you might consider making. We're a nonprofit. I connected with Dennis and Madeleine at an Orphan Drug Congress in Boston.
I had had interactions with myTomorrows years ago under different leadership, when it was more of a patient navigation service. Now it has much more of a focus on clinical trials. I chatted with Dennis and Madeleine there and invited them to present. They're going to talk about the work that they do and the services that they provide for navigation and their experience. Dennis Akkaya 1:43 Thank you, Brad.
And thank you for allowing me to share a little bit of how we operate within the space and appreciate everybody's time today. We constructed this today to be like a fireside chat, talking about patient navigators, and how we help guide patients through their clinical trial journey. Just as a matter of introduction, you see me here on the left, but I'm Dennis Akkaya. I'm the Chief Commercial Officer.
I've been with the company for nine years, very active in the pre- approval access space, and working in various capacities within the biopharma industry. Madeleine Carrier 2:41 I'm a pharmacist by training. I work as a patient navigator here at myTomorrows, performing the pre-screening assessments for our patients that are either wanting to explore or access clinical trials.
Dennis Akkaya
As an introduction to how our company helps or operates within this space. When Brad and I were talking about what we've achieved over the years, it's important for you to know that you probably get bombarded with a lot of solutions or service providers with a lot of stats, but this is how we view the world: we try to help a lot of patients in their journey.
This number that you see here is that we have engaged with 11,000 patients and provide a very high touch service, from the moment that they're interested in a clinical trial all the way to actual enrollment. Usually patients are also in touch with their treating physicians. These physicians also start to understand how we can help their patients in their clinical trial journey.
Usually, if they're satisfied, they tend to come with more patients and situations to understand the clinical trials. We operate globally from offices in the US as well as Europe. We're very familiar also with cross-border referrals, which we won't discuss today. But it does happen. As you can imagine, there are many patients that are somewhat less fortunate to have access to clinical trials, that sit outside of the Western Hemisphere.
We also collaborate with many biopharma companies that are trying to recruit more patients for their clinical trials. In essence, what we really try to do is help patients discover and access their treatments. I don't want to do too much promotion, but I thought it just might be helpful for you to give you a lay of the land, how we operate, and some numbers to explain our company. Brad came to us and said, We have this patient-led community.
” At a very high level, how it works on our side is that what we preferably want is for patients to be able to schedule a call with one of our patient navigators. Madeleine is one of those patient navigators that is based here in the US. The idea is that, if they schedule a call, our intent is to provide patients an overview of clinical trials that is based on their unique medical profile. We'll explain a little bit later how that works.
But that's usually as a second step. We always want to foster a shared decision-making process between the patient and the physician. gov. We want them to be able to have a discussion with their treating physician. Then they can potentially pursue one of those trials that are on there.
That is something that we would like to be involved in, in the sense that if they have selected one of those trials, or if they have additional questions about those trials, that they could receive adequate requests, whether it's the patient or the physician themselves, and then we can be part of the journey that goes beyond all the way towards potential enrollments. Again, we'll have some examples.
And as this is a fireside chat, I'll also be asking Madeleine some questions that might help clarify how that process somewhat works. Dennis Akkaya 6:36 Patient navigators are really critical. This ability allows us to speak with patients and serve them in their journey. It’s important for you to understand that whenever patients reach out to us, they have one dedicated point of contact from the moment that they reach out to us.
In this case, it could be Madeleine, but we also have other wonderful patient navigators.
On the intake call, usually what we tried to understand is: when were you diagnosed, what are your current treatments, but also very simple questions, like how willing and able are you to travel, because, as you might know, and this is a relatively well-educated group of individuals that know something about clinical trials, but travel distance also impacts the ability for us to present certain trials or for your success in terms of getting into one of those trials.
We know that many patients don't only speak English. Currently, we have between 10 to 12 languages on staff; obviously Spanish, but for a lot of European patients, there are many other languages that we have on staff. That usually really helps. These patient navigators all are medically-trained and have a medical background. They can be pharmacists, nurses, or some medical doctors.
A pharmacist is super important for us, that we provide that level of training, but also that they have that background to fulfill this role.
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