Cancer Patient Navigation: Expert Help for Coordinating Your Care
Featuring: Deb Christensen, MSN, APRN, Rebecca Driscoll
In short
Oncology nurse navigator Deb Christensen and Cancer Help Desk co-founder Rebecca Driscoll walk through the real obstacles cancer patients face — from finding the right tests and clinical trials to handling paperwork and insurance — and explain how oncology nurses and PhD scientists can work together to help. The resource covers practical navigation support across testing, treatment options, scheduling, and emotional coaching, and introduces Cancer Help Desk, a nonprofit that provides these services at no cost to patients.
- •Before your next oncologist appointment, ask a nurse navigator or patient advocate to help you prepare specific questions — you have an average of only 23 minutes with your oncologist, so going in ready matters.
- •If you're exploring treatment options beyond standard care, a navigator can help you identify clinical trials, expanded access programs, and providers willing to prescribe off-label — you don't have to search alone.
- •PhD scientists can review your pathology reports and medical records to give you an unbiased, biology-focused perspective on your case, which you can then bring to your care team.
- •Cancer Help Desk is a nonprofit that offers personalized navigation support — including connecting patients with oncology nurses and scientists — at no cost to patients; caregivers can reach out at any stage of the cancer journey.
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“The expertise that our PhDs hold are along the lines of cell signaling pathways and tumorigenesis, to biomarker investigation and discovery. They cover the gamut of understanding the biology at the molecular levels.
Meeting Summary
From their initial diagnosis, cancer patients and their caregivers are confronted with many challenges as they attempt to navigate the healthcare system, understand their disease, and deal with the emotional and social aspects of a life-threatening diagnosis:
•Emotional stress: Coming to grips with a life-threatening diagnosis while usually having no background in the disease, testing or treatment options, or the healthcare system.
•Complex cancer landscape : With a 94% growth 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 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 to help enable shared-decision making are essential in making that limited time as efficient as possible. Deb Christensen, MSN, APRN, is uniquely qualified to discuss how patients and caregivers navigate through the medical system and their cancer care journey. She has 20+ years of experience in nursing and has multiple certifications, including as an Advanced Practice Registered Nurse and Adult Gerontology Clinical Nurse Specialist with an oncology specialty. She was previously the Director of Patient Services for Cancer Commons and former System Lead for Oncology Navigation and Survivorship for a large healthcare system. She is regularly published by and a Contributing Editor for the Oncology Nursing Society’s publication, VOICE, and other nursing publications. Deb has committed the remainder of her working years to helping cancer patients navigate to the best possible care. Starting Cancer Help Desk is her “dream job” and every day is committed to helping patients and caregivers who can benefit from her experience as an oncology advanced practice nurse. Cancer Help Desk is a nonprofit dedicated to empowering individuals facing cancer. Their services range from guiding patients to optimal resources, tests, and treatments to connecting them with expert oncology nurses and PhD scientists for personalized care plans. Deb was joined by Rebecca Driscoll, Co-founder and CEO at Cancer Help Desk. What are the challenges that cancer patients and caregivers face in navigating their care that nurse navigators can help with? Testing
•Identify what tests to get, when to get testing done, and get access Treatment
•Understand cancer treatment options
•Navigate clinical trials (identify, prioritize, get information, access)
•Assess molecular pathways and identify treatable targets
•Access treatments, especially off-label or non-standard, e.g., through expanded access, compassionate use, patient assistance
•Find a provider willing to prescribe off-label Administration
•Schedule appointments
•Gather and review medical records
•Shop for service providers (identify, recommend)
•Fill out applications and paperwork
•Get insurance reimbursement Coaching
•Prepare for doctor conversations
•Provide emotional support, listen, validate How can scientists help patients and caregivers navigate cancer care?
•Provide an unbiased view of your case and offer personalized treatment suggestions, focusing on the biology of your cancer
•Analyze medical records and pathology reports What lessons can you take from these navigation services to apply to your care? Review these services to see which ones could be provided by a navigation service versus ones you could do yourself or get through other sources, such as your medical team or a network of fellow patients 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, work, talk, clinical trials, oncology nurses, oncology, navigation, rebecca, scientists, questions, cancer patient, services, nonprofit, doctor, deb, care, wanted, information, estrogen SPEAKERS Deb Christensen (53%) , Paul van Camp (16%) , Jeffrey Dwyer (12%) , Brad Power (9%), Rebecca Driscoll (7%) , Brian McCloskey (2%) SUMMARY The conversation centered around the importance of empathy, communication, and collaboration in cancer care. Speakers emphasized the need for personalized support and tailored treatment options based on biomarker testing. They also discussed the challenges of accessing alternative treatments, particularly for those with limited financial means, and the importance of improved communication between patients and healthcare providers. The speakers highlighted the value of patient advocacy in navigating the complex healthcare system and the need for a comprehensive approach that includes oncology nurses, PhD scientists, and companies. OUTLINE Introductions of Deb Christensen, Rebecca Driscoll, and Cancer Help Desk.
•Cancer Help Desk founders Deb Christensen and Rebecca Driscoll share insights on navigating cancer care.
•Deb Christensen shares her passion for nursing and oncology and her experience as a nurse navigator for breast cancer patients, then expanded to all cancers.
•She co-founded nonprofit Cancer HelpDesk to focus on patients' needs now. They use oncology nurses and PhD scientists to help cancer patients navigate clinical trials and biomarker testing.
•Oncology nurse navigators help patients understand cancer treatment options and navigate clinical trials.
•Scientists provide an unbiased view of each cancer case and offer personalized treatment suggestions. Cancer navigation services, coaching, and resources for patients and families.
•Deb Christensen formed an oncology nurse advisory board to provide guidance on programs and campaigns.
•She coaches family members on how to approach doctor conversations and identify resources for expanded access.
•She discussed a young girl with brain cancer who was being treated at a top institution, but the mother was in conflict with them about the treatment. The mother preferred the standard treatment, but the institution wanted to use a biosimilar that had never been trialed in pediatric patients. Cancer patient assistance programs and clinical trial navigation.
•Deb Christensen advocates for involving multiple organizations in patient assistance programs.
•Cancer Help Desk offers personalized support for cancer patients, including scheduling appointments and navigating clinical trials.
•Rebecca Driscoll shares her experience navigating cancer treatment, including the value of PhD scientists in understanding cancer biology. Cancer treatment options and the role of scientists in providing unbiased information.
•Paul Van Camp advocates for universal support for cancer patients, citing limitations in standard of care treatment.
•He expresses skepticism towards the focus of cancer research organizations on integrating scientific knowledge into patient care.
•Deb Christensen discusses the use of biosimilars in cancer treatment, highlighting the importance of scientific information in informing decisions.
•She emphasizes the challenges of navigating multiple opinions and perspectives in cancer care, with science providing a helpful framework for decision-making. Patient advocacy, fee structure, and business model for cancer support services.
•Nonprofit organizations arm patients with information to advocate for themselves in medical settings.
•Cancer Helpdesk offers personalized navigation services for patients and organizations. Cancer support services for patients and caregivers.
•Rebecca Driscoll emphasizes the organization's goal of serving patients at no cost, while also working with companies to provide additional value.
•The organization aims to help patients navigate complexities around genetic tests, providing logical steps and addressing physician concerns.
•Patients and caregivers at any stage can benefit from Cancer Help Desk support. Challenges in finding off-label cancer treatment options.
•Jeffrey Dwyer shares his experience with the challenges of navigating standard of care.
•He seeks off-label medication from a medical oncologist and faces challenges due to institutional constraints.
•He expresses frustration with navigating medical billing and insurance coverage for off- label treatments.
•He needs to advocate for himself to seek alternative sources for hormone therapy, such as naturopath or supportive female networks.
•Patients may need to be prepared to collect and present research to their doctors to support their treatment decisions.
•Paul Van Camp mentions finding physicians willing to prescribe off-label drugs, and Glenn Sabin is working on compiling a list of such people.
•Brian McCloskey asks how involved RxSpark gets in the process of accessing biosimilar drugs, and Paul mentions that they identify options for patients and work through the office.
•Rebecca Driscoll shared her experience navigating the complex healthcare system for a patient with leukemia.
•She emphasized the importance of finding the right provider who is willing to work hand in hand and advocate for the patient.
Full transcript
Brad Power This is another weekly webinar of the Cancer Patient Lab. We're happy to have Deb Christensen from Cancer Help Desk to share her perspective on helping patients navigate cancer care, which is what we're all about at the Cancer Patient Lab. This is for information purposes only. We're trying to help patients get information that they can take to their medical team. But this is not medical advice.
You should review whatever you hear today with your medical team. The Cancer Patient Lab is a patient-led nonprofit community, and we would welcome any donations that you might be inspired to make. We've known Deb Christensen and Rebecca Driscoll for ages. They're good friends. They've been doing this kind of navigation support for patients for a long time. Recently, they formed Cancer Help Desk. They're about a year old.
Rebecca is the founder and CEO, and Deb is the founder and the leader of the navigation services. As is typical with our format, she's going to introduce herself, introduce some key messages, lessons learned, insights, how they do their work, the services that they provide.
Then we'll reserve the lion's share of our time for questions and answers and conversation to understand how people can access these services and what the services might mean for their care. Deb Christensen 2:27 The thing that I do in my work that makes it so meaningful is having conversations with people. I haven't been joining the Cancer Patient Lab meetings.
I'm going to make amends to that and start attending because I really do like to hear your conversations and learn from you as well. I hope that I can share something today that you, even conversationally, can learn from each other. A little bit about me. I have had multiple careers in my life. I never really thought I wanted to be a nurse. But my mom went to nursing school. I was doing hair. I was sewing, I was doing all kinds of other things.
But following her example and the thought of being able to help people in a meaningful way, I went to nursing school and got into surgical services initially. Then I wanted to do something a little bit different, a little bit more. I love change. So I applied for a nurse navigator job in oncology. I didn't know anything about oncology. You think that nurses just know the whole gamut because you went to school, or doctors know the whole gamut.
But you really focus on your specialty, wherever you are. You learn that really, really well. Oncology was a whole new dialogue for me. I learned so much from the people that I talked to. The first two years I learned more from the patients than I learned in any classes or conventions or anything because that's where the meaningful work is done. I was a nurse navigator for , APRN) Oncology was a whole new dialogue for me.
I was a nurse navigator for breast cancer patients initially. I would go into the chemo suite and talk to three or four people there, and there'd be seven people that I didn't talk to. I didn't like that. I felt uncomfortable, not talking to everybody. So I told the director I wanted to do all cancers. That's what I did for many, many years. I am so grateful to have that experience and not have had a specific cancer specialty.
I know a little bit about a lot of different types of cancer and have a foundation for learning from that. I was charged with standardizing their navigation across the entire system. We had 22 different hospitals. We had seven different nurse navigator pods, if you will, at different facilities. We didn't even know each other's names. We were just working very independently within the region that we were in.
Over the course of the next two years, I was able to bring us together and standardize some of the processes across the system. Then I decided maybe I wanted to retire because it got a little political, and I didn't want to deal with it, truth be told. I retired for six weeks, and it was driving me nuts. So I went to work for a nonprofit. I had never considered that before. It was wonderful meeting people.
I met Al Musella through the nonprofit; Brad Power through the nonprofit; Rebecca Driscoll through the nonprofit, other people that come to Cancer Patient Lab I met through through this nonprofit; and had some really successful time there. Then when they changed directions a little bit, myself, the CFO, and Rebecca, who was the CEO of the company at the time, decided that we still wanted to focus on patients in the now.
That's what Cancer Help Desk does – focus on patients in the now, what do you need now at this particular part of your journey? While we want to learn a lot and change the world of cancer, we were wanting to do it one person at a time in a meaningful way. That's a little bit about me, and about why I wound up here at the Cancer Help Desk. At Cancer Help Desk, our unique claim is that we use both oncology nurses and PhD scientists.
That was new to me. I had worked with many, many doctors, and doctors are great. They have their ways about them. But working with a scientist was very different – understanding how they saw cancer, recommending different clinical trials, and really focusing on the biology of cancer. I was in the oncology world where cancers were treated as a specific cancer, and this was the treatment.
We were just barely getting into the genomics and NGS testing. I was fortunate enough to be with one of the physician scientists that really brought that into our system, and I sat on molecular tumor boards with specialists from all over the country and heard all of these letters and names and tried to figure them out. I took notes. It was a crazy time. Now it seems a lot more commonplace.
We use our PhD scientists, as well as our oncology nurses, to help patients identify the most suitable biomarker testing, as well as help them with clinical trials. As I got out into the nonprofit world, I realized that there were some big gaps that weren't happening. They weren't happening in the system I was in very well, and it was a robust system. I knew that it wasn't happening well anywhere else.
That was helping patients navigate clinical trials, and helping them understand what they didn't know. You don't know what you don't know. You get into this experience. It is overwhelming, at the very least, and you don't know what to ask for. The questions to ask your doctor have changed dramatically from, “What is the treatment? ” and advocating for those biomarkers to be done. Different tests come up as well.
The Cancer Help Desk approach is using both the scientists and the oncology nurses to assist and help patients navigate. ” But as I have conversations with people, you really need a nurse for this because answering those clinical questions in real time becomes really meaningful to the person that I'm speaking with. Deb Christensen 10:10 Some of the things that we specifically do.
We can gather records, review medical records, and then assess if biomarker testing has been done? Do you even know what biomarker testing is? My strategy when I first contact a patient is to just ask them, just have a conversation. Through that conversation, I glean whether biomarker testing has been done, do they even know about biomarker testing, so that I have a good jumping off point to begin educating. Clinical trial navigation.
I'm sure anyone that's delved into clinical trials recognizes that it is very complex. Even when you've been sifted through, and you think somebody qualifies for a clinical trial, there'll be something that falls through. At Cancer Help Desk we really feel like having plan A, plan B, plan C, that you have plans in place, before you need them. Hopefully you won't need them, but you have them anyway.
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