Cancer Navigation: Expert Help Through Your Cancer Journey

•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.

•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. Tools for shared-decision making are essential to make that limited time as efficient as possible. Samira Daswani is uniquely qualified to help cancer patients and caregivers understand their disease and navigate testing and treatment. Samira has designed, launched, and taken multiple products through the FDA regulatory process. She was diagnosed with breast cancer a week after turning 30. She decided to channel her personal cancer experience into a mission to help patients, survivors, and caregivers thrive during their own cancer experiences by founding "Manta Cares". Manta Cares helps make navigating the cancer experience a little easier by creating resources and tools to help patients, survivors, and their care partners. Manta Cares offers a bi-weekly podcast, "Patient from Hell", and a newsletter that features cancer education and resources. The "Manta Planner", a science-backed paper planner for cancer caregivers and patients, helps them make informed treatment decisions, track symptoms, and organize appointment notes. What are the challenges you find as a patient or caregiver in navigating your can cancer care?

•Demystify cancer: Enabling you to know what to expect

•Trustworthy sources : Finding clear and accurate information, avoiding disinformation; overcoming distrust of the healthcare system, research, AI, and social media; knowing who to trust

•Interpretation: Interpreting marketing, test results, treatment options, clinical practice, and other information, avoiding misinterpretation

•Information obsolescence : Keeping up with continuous innovation in testing and treatment options and information; for example, the number of cancer treatments have doubled in the last five years, and medical information is doubling every 73 days (Clinicians face a similar challenge – only 1% of oncologists are clinician scientists, while the rest rely on the evidence-based guidelines to quickly access information for treatment decisions.)

•Personalization: The complexity of interpreting multiple test results, including transcriptomics, proteomics, and longitudinal data → translating that into a personalized model of your disease → developing your treatment strategy

•Digital tool selection : Most patients and caregivers use more than 15 digital tools to manage the many aspects of their care, while 25% don’t use any digital tools.

•Using mental health services : 53% of cancer patients are lonely and depressed, yet there is low utilization of support programs.

•Time and attention : Up and down demand for information as your medical situation changes, emotions change (e.g., denial), and other demands compete for your time and attention What help do patients and caregivers need to navigate their cancer care?

•User-centered design : Services based on your decisions and needs, prioritizing empathy, design, and collaboration (not your role in others’ clinical processes or drug discovery)

•Trustworthy information : A trustworthy, evidence-based source of reliable information to guide decision-making

•Continuously updated information : Continuous scanning to reflect the rapid innovation in cancer tests and treatments

•Digital tools: Intuitive digital tools to enable a more active role in your care

•Personalization: Information, matching, and presentation, customized to you What are Manta Cares’ services?

•A notebook (available now): a personal cancer appointment planner designed for patients and families, including templates for tracking symptoms, medication, and nutrition, as well as space for customization

•Navigation maps (in development): Maps to help patients navigate cancer treatment in specific diseases, like lung cancer, which bridge clinical guidelines, patient preferences, and support resources for equitable care How will Manta Cares’ navigation maps be different from other sources, such as the guidelines?

•Ease of use: Draws inspiration from everyday life and design principles, more than a flowchart; designed from the ground up on patient and caregiver decisions and needs (not just a simplified version of clinician guidelines)

•Survivorship: Emphasizes the importance of living with a condition (not just a specific treatment decision)

•Biology perspective : Bases guidance on disease biology, allowing for more accurate diagnosis and treatment (not just clinician guidelines)

•Services direction : Pointers to service providers, e.g., for financial management (not just medical care) How can you support the development of Manta Care’s navigation services?

•Learn more about the new maps product and help in development; request a demo and give feedback

•Listen to the "Patient from Hell" podcast

•Buy the Manta Cares notebook 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 patient, cancer, guidelines, clinician, map, disease, tools, oncologist, oncology, treatment, learned, information, prostate cancer, breast cancer, experience, good, point, Samira SPEAKERS Samira Daswani (58%), Brad Power (16%), Brian McCloskey (8%), Allen Morris (8%), Molly Lindquist (3%), Rick Stanton (3%), David Plunkett (2%), Mark Stoner (1%), Jeff Krolick (1%) OUTLINE 1.Cancer patient experiences and entrepreneurship. (0:04) 2.Cancer patients' self-education and digital tool usage. (6:38) 3.Healthcare trends, patient education, and the role of AI in healthcare. (12:33) 4.Trust in medical information and the role of AI in interpreting patient data. (17:50) 5.Cancer research and treatment, with a focus on prostate cancer. (25:46) 6.Cancer treatment guidelines and their limitations. (28:48) 7.Creating a cancer care planner for patients and families, emphasizing personalization and equity. (34:59) 8.Creating a patient-facing tool for cancer treatment with a focus on usability and accessibility. (40:24) 9.Challenges in bioinformatics and clinical practice, including limited access to tissue analysis and difficul difficulty in interpreting multi-omics data. (46:52) 10.Personalized medicine, drug development, and mapping for cancer treatment. (52:27) SUMMARY During the conversation, patients and caregivers shared their questions on enhancing their experiences in cancer care. Brad Power emphasized the importance of patient-led initiatives, while Samira Daswani highlighted the need for a human-centered approach. Patients discussed the challenges they and their families face during treatment, and agreed on the need for a more patient-centered approach prioritizing empathy, design, and collaboration. They also discussed the complexities of cancer diagnosis and treatment, including the need for a trustworthy, evidence-based platform to provide patients with reliable information. The speakers also discussed the development of a personalized cancer navigation and support tool, and the importance of creating a comprehensive platform that integrates guidelines, clinical practice, and patient preferences. Finally, they acknowledged the limitations of their product in solving financial toxicity and emphasized the importance of highlighting areas of potential problems and partnering with organizations that can provide expertise. Cancer patient experiences and entrepreneurship.

•Brad and Samira connected through mutual friends in cancer advocacy work.

•Molly: Met friend Bryce after breast cancer diagnosis, joined forces to improve patient experience.

•Samira: Learned the hard way that designing healthcare products in the US is tough, got a degree in design and led product management at a medical diagnostic company.

•She shares her personal experiences with breast cancer, emphasizing the importance of patient input in cancer research. Cancer patients' self-education and digital tool usage.

•Samira Daswani highlights the importance of addressing the business of oncology, citing the rapid growth of cancer drugs and treatments.

•Patients and families are taking a more active role in managing their care, with many using DIY tools and facing challenges in finding adequate support.

•Brad Power expresses surprise at 70% of people self-educating and making decisions, while Molly and Samira Daswani share similar findings on the breakdown of patient behavior.

•97% of cancer patients and families use Google for self-education and care management, while only 25% do not use digital tools. Healthcare trends, patient education, and the role of AI in healthcare.

•Samira Daswani discuss trends in healthcare, including self-education and AI's impact on decision-making.

•She discusses the drastic change in marketing efforts for oncology, driven by patient distrust of the healthcare system.

•She mentions the challenge of providing clear and accurate information to patients through patient portals, with potential for misinterpretation or incorrect information. Trust in medical information and the role of AI in interpreting patient data.

•Brad Power highlights the value of medical experts in interpreting complex medical reports.

•Samira Daswani shares their experience with PubMed and Google Scholar, mentioning the rapid pace of medical information and the challenge of keeping up.

•She questions the role of clinicians in staying up-to-date with medical research, suggesting that a new layer of value may be needed to help them keep pace.

•Jeff Krolick and others express concern about data manipulation in well-respected research institutions, leading to distrust among patients and lack of trust in AI tools.

•David Plunkett and others share experiences of patients seeking help and advice on social media platforms, but facing challenges in evaluating the credibility of information and sources. Cancer research and treatment for breast and prostate cancer.

•Allen Morris compares breast and prostate cancer, highlighting similarities and historical parallels.

•He notes that the guidelines are now exclusively online and nobody can keep up with the rapidly evolving cancer research. Cancer treatment guidelines and their limitations.

•Allen Morris acknowledges that only 1% of oncologists are clinician scientists, while the rest rely on guidelines for treatment decisions.

•Samira Daswani agrees that clinicians use tools like the app to quickly access guidelines for patient care.

•She emphasizes the importance of guidelines in evidence-based care, but acknowledges limitations in areas with limited evidence.

•She discusses the challenges of navigating cancer treatment without support, and highlights the importance of family and community. Creating a cancer care planner for patients and families, emphasizing personalization and equity.

•Samira Daswani describes the Manta Cares cancer planner designed for patients and families.

•The planner includes templates for tracking symptoms, medication, and nutrition, as well as space for patients to make it their own.

•She describes maps being developed to help patients navigate cancer treatment, emphasizing personalized support. cer treatment, emphasizing personalized support.

•The maps aim to bridge clinical guidelines, patient preferences, and support resources for equitable care. Creating a patient-facing tool for cancer treatment with a focus on usability and accessibility.

•Samira Daswani discusses the "Patient from Hell" podcast.

•She invites listeners to learn more about the digital product and potential collaboration opportunities.

•She explains how their maps differ from guidelines, emphasizing the importance of living with a condition.

•She emphasizes the importance of making patient-facing guidelines easy to use and understand, drawing inspiration from everyday life and design principles.

•She highlights the unique value of their product in adding more value than just presenting guidelines in a flowchart format. Challenges in bioinformatics and clinical practice, including limited access to tissue analysis and difficulty in interpreting multi-omics data.

•Brian McCloskey shares his personal experience with bioinformatics analysis, highlighting the gap between clinicians and the information provided.

•Samira Daswani confirms the commonality of this issue, with multiple patients facing similar challenges in various types of oncology.

•She highlights challenges in integrating guideline science, clinical practice, and operationalization of NGS in cancer treatment.

•Brian McCloskey notes limitations of tissue availability and evolving cancer diagnosis, emphasizing need for solutions to address these challenges. Personalized medicine, drug development, and mapping for cancer treatment.

•Brad Power highlights the complexity of analyzing multiple variables in cancer diagnosis, including transcriptomics, proteomics, and longitudinal data.

•Samira Daswani explains that their matchmaking approach is based on disease biology rather than clinical guidelines, allowing for more accurate diagnosis and treatment.

•She discusses the complexity of breast cancer, mentioning differences between early stage and metastatic disease.

•Mark Stoner shares his personal experience with cancer treatment costs, highlighting a $76,000 bill for a 6.5-hour infusion.

•Samira Daswani acknowledges limitations of their product in addressing financial toxicity, but aims to highlight areas of potential problems and partner with experts.

•Rick Stanton requests a demonstration of the product to better understand its value and how it can benefit patients.