June 15, 2024 - Cancer Patient Lab Meeting #96
Discussion forum: community.cancerpatientlab.org
“When I left Pfizer I started Salem Oaks to teach patients how pharmaceutical R&D really works, so that they can have a greater impact as they approach companies, academic researchers, or the FDA. It's a lot easier to win the game if you know how the game is played.
“I'm trying to get some feedback from you, and also offer to you a service that we put together.” - Kevin Freiert
Meeting Summary
About 70% of cancer patients and caregivers are educating themselves about their disease and engaging in their medical decisions, but they are confronted with many challenges as they try to navigate their care, including their consideration of clinical trials:
● An increasingly complex cancer landscape: With a 94% increase in the number of cancer treatments available over the last five years, it is becoming more difficult for both patients and providers to stay up-to-date on rapidly evolving guidelines. The continuous approval of new tests and therapies means that what you know becomes obsolete every six months or so.
● Preconceptions about clinical trials: Many patients and caregivers consider clinical trials to be higher risk than standard treatments. They don't want to be lab rats in an unproven experiment
● Difficulties in understanding the process of clinical trials: Drug discovery and development consists of multiple layers filled with dependencies, hidden risks, and changing policies
● Information overload: Patients and families have unprecedented access to information (97% of patients use Google), yet are overwhelmed due to the lack of information curation and medical education to interpret complex test results, treatment options, and molecular biology
● Limited time with doctors: Cancer patients have on average only 23 minutes with their oncologist, and healthcare providers are seeing an increased number of cancer patients
Kevin Freiert, Owner and CEO of Salem Oaks, a healthcare education services company, is uniquely qualified to lead a discussion about the challenges and solutions for educating patients and caregivers about clinical trials. During his 30-year career with Pfizer, Kevin acquired a broad and deep understanding of the drug discovery and development process. He is a recovered rare cancer patient. He educated colleagues and others about pharmaceutical R&D, including establishing and running Pfizer Research University. Salem Oaks builds educational resources about pharmaceutical research and development tailored to the specific needs of patients. They have mapped out all the on ramps, roundabouts, express routes and service stations along the drug discovery and development journey. Kevin is the host of three podcasts: Raising Rare, LEMS Aware, and Improbable Developments.
This session includes the following. discussion points.
Evaluating Treatment Options
● Finding credible sources to evaluate treatments, assessing the credibility of research literature and claims about treatments
● Comparison of standard of care treatments versus treatments available through clinical trials
● Potential trade-offs that come with clinical trials
Accessing Treatments
● Navigating the FDA regulatory process, especially for access, such as expanded access, compassionate use, and right to try
● Reviewing eligibility criteria to see whether you can qualify for clinical trials; knowing what the prerequisites are can change your decision tree
● How to access drugs off-label
● Assessing the timing of the availability of a drug through a clinical trial and weighing that against the likelihood of disease progression in the meantime
Behaviors
● How to ask tough questions, how to advocate for yourself
● Examples of patient journeys, such as how a patient successfully advocated for themselves
Available resources to educate patients and caregivers about cancer and drug development
● Content available through video, audio, written forms
● Bite-sized learning modules
● Online discussion board: a place to ask questions, lasting records of discussions
● Flexible and self-paced learning opportunities, tailored to individual pathways and needs
● Include examples to illustrate concepts
What can you do to educate yourself about drug development?
● Explore Salem Oaks’ Atlas platform and provide feedback
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.
Full transcript: docs.google.com/document/d/1g...
15 июн 2024
