Patient from Hell

Key Takeaways: 

1. Overview of ovarian cancer. 

2. Karen’s journey and experience of building the National Ovarian Cancer Coalition (NOCC) and the power of the community

3. The science and symptoms of ovarian cancer; building awareness and education resources for women

About Karen Young and the National Ovarian Cancer Coalition

Karen Young has been working in the nonprofit sector for more than 35 years and has been the Midwest Regional Manager for the National Ovarian Cancer Coalition for more than a decade. Located in Chicago, she oversees six states in the Midwest including Illinois, Indiana, Iowa, Missouri, Kentucky, and Tennessee. Ms. Young is passionate about the work she does with survivors. Ovarian cancer is one of the leading gynecologic cancers for women and is very often diagnosed in the latter stages. There is no early detection test for this cancer and the programs and services that the NOCC provides are crucial for that reason. She enjoys community collaboration to find the most meaningful partnerships to support her teal community.

The Midwest region has quite an array of programs and services available to its survivors and serves over 700 women in the region. Ms. Young has a large corps of volunteers helping to execute programs and services in her area including free meals, free counseling, and financial assistance as well as educational programs and support groups. The chapter offers a variety of opportunities for survivors to meet each other and support one another especially through events like their annual Midwest Together in Teal walk to be held October 15th.

Quotes

At 2min and 10 seconds

“Being one of her primary caregivers, and going through that experience, just really gravitated towards wanting to work with a cancer organization. And I knew nothing about ovarian cancer. But it was because of my mom that it interested me.”

At 5min and 20 seconds

“The pandemic pushed a lot of nonprofits, including us, you know, out of our comfort zone to reinvent ourselves to go virtual with everything and everything that we do. And the simple fact is, we were starting to identify some of the most basic needs.”

At 14 mins and 07 seconds

“In fact, the reason why the rate is so high for late stage diagnosis is because there is no reliable early detection test at all, hasn't been in years, they're still working on trying to find one. And even though there are tests that you can get if you suspect like let's say you have symptoms and you go and talk to your general doctor or even your gynecologist and you suspect that maybe you have ovarian cancer, there are some things that they can do to verify whether you do or not, but they are not reliable enough to become an early detection test that they would recommend for us annually every year.”

At 23mins and 47 seconds

“We talk about the trust and the relationship that we have with our medical professional, you know whether or not you can really feel comfortable that you're getting the best care and they are going to guide you and tell you what you need to know. And if it's really not important at this time, then don't bother me with those details. I can sleep better at night, if I don't know.”

Resources

An Animated Patient’s Guide to Ovarian Cancer - https://nocc.ovarian.org/animated-patient-guide

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast we cover:

1. Personal experience and reflections from being a caregiver

2. Understanding the survival early-stage oncology investing ecosystem

3. Emerging themes and trends in oncology innovation and patient care

About our guest:

Mark Mendel is the Managing Director of Mendel Consulting LLC. They advise fund managers and scientific and technical founders, and guide company-building and fundraising activities at multiple start-ups. Prior to this, he was a Venture Partner at Artio Medical and Director at Intellectual Ventures. Mark served as managing director of RiverVest Venture Partners, which he co-founded. Before RiverVest, Mark was a vice president with ARCH Venture Partners. During his four-year tenure there, he established the firm's New York City operations, co-led the seed financing at Optobionics and served as board observer at Optobionics and GenVec. He has also been a Kauffman Fellow.

Mark holds PhD. in Bioengineering from University of Pennsylvania.

Key Insights:

At 9 minutes and 5 seconds

I would say to the listeners, just substitute the person's judgement - the one who's struggling - and do what they want. Doesn't matter, whatever it is you think.

At 24 minutes and 30 seconds

But you can break that balkanization that there's your family, caregivers, people in your life previously who are caregivers.

At 29 minutes and 32 seconds

I think one of the rules that makes it a safe place for investment has been, that if you ultimately can develop a therapeutic benefit for patients, it's going to be a winner, and the details that don't matter very much.

At 47 minutes at 50 seconds

There's a lot of interest in seeing how to use nutrition to help with cancer therapy. There's hints of efficacy that are very promising. Now how you go from there to developing a therapy thing is a really important question that I find very interesting.

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast we cover -

1. Nuances of understanding value-based care and the invisible care-giver economy

2. The importance of caring for caregivers

3. Insights on who the caregivers are and their experience with COVID

Nirav R. Shah, MD, MPH, is Senior Scholar at Stanford University’s Clinical Excellence Research Center. He is a leader in patient safety and quality, innovation and digital health, and the strategies required to transition to lower-cost, patient-centered health care. Board-certified in Internal Medicine, Dr. Shah is a graduate of Harvard College and Yale School of Medicine, and is an elected member of the National Academy of Medicine. He serves as an independent director for STERIS plc, as trustee for The John A. Hartford Foundation, as Senior Fellow of the Institute for Healthcare Improvement (IHI), and as a member of the HHS Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030. Previously, he served as senior vice president and Chief Operating Officer for clinical operations for Kaiser Permanente in Southern California, and as Commissioner of the New York State Department of Health.

Quotes

At 3mins 27 seconds

“I learned from the AARP, the American Association of Retired Persons, that unpaid family caregivers are responsible for about $500 billion, that's Billion with a B, dollars of care every year that they're not paid for. So fully 2% 2.5% of our GDP in America is silent, it's invisible.”

At 5mins 18 seconds

For the last few decades in America, we've been talking about this thing called value based care. And what value based care means is that we're not going to be paying for things one at a time, we're going to be paying for improvement in outcomes and overall care.

At 13mins 09 seconds

I'm making a story about how important it is to move care into the home. Well, I think that's what we used to call house calls a few decades ago, right? It used to be normal that the doctor came to you in your home, and actually outside of America, that is still the norm in many other countries. So what we're finding is that we're reinventing and rediscovering what used to work, it made a lot of sense.

At 16mins 22 seconds

The research we've done at Stanford so far has shown that this cost and burden can last decades in terms of psychological impact, in terms of total cost of care in terms of your own health burdens, in terms of having heart attacks, in terms of dying young, as a caregiver, that kind of impact can be averted. And that's the lesson here is take care of yourself. So you can better take care of your loved one as well.

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast, we cover - 

1. Taking PanCan global and multicultural insights on cancer

2. The art of translating a movement into a sustainable organization

3. Importance of doing the hard and obvious things

As the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC), Paula Kim brings more than 30 years of executive and entrepreneurial leadership in business and not-for-profit ventures. Paula is recognized on the grassroots, national, and international levels for her consumer-focused leadership and innovation in communication and outreach for business, healthcare and advocacy strategies. Paula Kim's commitment to advocacy, advancing research, and helping patients and families came from personal reasons – her dad’s pancreatic cancer diagnosis in 1998 and untimely death only seventy-five days later.

Despite no prior experience in national advocacy, patient programs, or public policy, she jumped headfirst into a major transition from building homes to leading volunteers and building hope and programs for patients and researchers. In 1999, Paula co-founded the Pancreatic Cancer Action Network (PanCAN) with Pam Acosta Marqhardt and Terry Lierman, the first national patient advocacy organisation for pancreatic cancer; and served as President, Chairman of the Board, and Chief Executive Officer.  In 2004, she resigned from the organisation and moved forward to establish Paula Kim, Inc-TRAC.

Paula Kim’s vision and team-building style led PanCAN’s growth from a handful of online chat volunteers into a national resource for the pancreatic cancer research and patient communities, with pioneering programs for clinical trials matching, PALS-patient services, patient education symposia,survivor-caregiver networks, grassroots development, research mapping, and career development research grant funding. She also led PanCAN’s policy efforts, which yielded then, an unprecedented increase of over 350% in federal government investments in pancreatic cancer research.

Quotes

At 2 minutes

Back in the early 2000s, I had a number of advocates from other countries that would reach out to me. And so I had a group of fabulous advocates from Japan, for example, that came over and shadowed me for days on end, and wanted to learn about building programs similar in their country. They wanted to learn about how to talk to policymakers. And so I created my consulting practice track translating research across communities, for that purpose to help globally.

At 10 minutes

“To an extent that's why I want to congratulate you on the Manta Planner, because on one level, it seems very basic and very simple. And you say, well, why has nobody done this before? For this, I have a theory that sometimes people just don't want to put in the effort that it takes to do something.

At 18 minutes

“There were so many people involved in the growth of pain in PanCan. Our very first staff members and the people that we hired, and the people who were willing to give their time and their resources to a little startup group that had no track record. And the many, many volunteers who poured their heart and soul into everything that we did.”

References

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast we cover -

1. Learnings and insights from the early days of setting up PanCan

2. Art and science of community building

3. Nuances of interdisciplinary collaboration and personal learning and upskilling in the face of complexity

As the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC), Paula Kim brings more than 30 years of executive and entrepreneurial leadership in business and not-for-profit ventures. Paula is recognized on the grassroots, national, and international levels for her consumer-focused leadership and innovation in communication and outreach for business, healthcare and advocacy strategies. Paula Kim's commitment to advocacy, advancing research, and helping patients and families came from personal reasons – her dad’s pancreatic cancer diagnosis in 1998 and untimely death only seventy-five days later.

Despite no prior experience in national advocacy, patient programs, or public policy, she jumped headfirst into a major transition from building homes to leading volunteers and building hope and programs for patients and researchers. In 1999, Paula co-founded the Pancreatic Cancer Action Network (PanCAN) with Pam Acosta Marqhardt and Terry Lierman, the first national patient advocacy organisation for pancreatic cancer; and served as President, Chairman of the Board, and Chief Executive Officer.  In 2004, she resigned from the organisation and moved forward to establish Paula Kim, Inc-TRAC.

Paula Kim’s vision and team-building style led PanCAN’s growth from a handful of online chat volunteers into a national resource for the pancreatic cancer research and patient communities, with pioneering programs for clinical trials matching, PALS-patient services, patient education symposia,survivor-caregiver networks, grassroots development, research mapping, and career development research grant funding. She also led PanCAN’s policy efforts, which yielded then, an unprecedented increase of over 350% in federal government investments in pancreatic cancer research.

Quotes

6 minutes

“It was Pam and I, and some debt on our credit cards. And that's how we open the door. And then from that grew, many, many things. And I think most important were things such as bringing together a community of people who cared. Helping them establish a community and a voice. A voice that we then channelled into public policy to try and help policymakers and legislators understand the need for the disease, a community that we developed into volunteers that were all across the country that wanted to raise awareness in their own communities.”

17 minutes

“So by building a community of caregivers and family members, we were able to raise our voice on Capitol Hill. A little bit like a Trojan horse, because we weren't as big perhaps, but we tried to make our voices loud. And then we joined together with other cancer advocacy groups and coalition's which again, was a different type of a community, right.

28 minutes

“The reality is it was disproportionate because those other cancers that I named, had more advocacy and more people in Washington, DC knocking on the doors. And I said to NCI,  whether we're here or not, it's your responsibility to take care of this population as all of them.”

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast, we cover - 

1. Insights on the evolution of medical science, public policy and funding for cancer care in the US

2. The importance supportive care, guidelines and resources, and the role of NCCN and the NCCN Foundation

3. Framework for understanding life-span and quality of life for patients and caregivers

Patrick Delaney is the Executive Director of the NCCN Foundation. Pat joined the NCCN team in 2021 and is a well-rounded professional with over 30 years of experience in management, strategic planning, sales, change management, government relations, fundraising and constituent care.

Quotes

4 minutes and 38 seconds

“My brother was diagnosed with liver cancer and unfortunately it was a terminal diagnosis and we've since lost him. But it reminded me of my not only passion for, but my commitment to getting back into the cause, which just took me a while to get back here. So [I] started looking for my next opportunity specifically in the cancer space, and found the NCCN.”

11 minutes

“Our focus with NCCN is to bring together some of the brightest and best in oncology care to develop our core product known as our NCCN clinical practice guidelines. And these are the guidelines for clinicians that give the, the, the best care recommendations based upon one's cancer diagnosis. What we do here at the foundation is philanthropic.”

15 minutes

“If I may I'll use breast cancer as an example, there's one clinical practice guideline it's quite large for, for breast cancer. We've, adapted that into three breast cancer patient guidelines to bring it a little bit to your question, more focused for the, for the retrospective patient population. Um, and we just got funding, very excited. We're gonna have our first ever patient guideline for breast cancer screening coming out later this summer.”

20 minutes

“In the cancer community from a research standpoint, we've created the NCCN foundation’s Young Investigator Rewards Program. These are two year grants to early career investigators within our NCCN member institutions. And again, our member institutions represent 32 of the top academic centers across the US.”

26 minutes

“Just looking at the quality of life from date of diagnosis, uh, through end of life, whether it was cancer related death or not in my own family members has been phenomenal just looking at, you know, my, my dad was diagnosed in 1998 with, with lung cancer and just watching the quality of his life. Uh, he made, he survived almost six years post-surgery um, versus several years after that with my mom had her stomach cancer versus several years after that with my sister, with her breast cancer, just quality of life addressing the treatment options, the nausea and vomiting impact of the various, you know, treatment object. It's just nice to see such attention.”

References

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast, we discuss - 

1. Is a chess analogy really appropriate for cancer

2. Pros and cons of thinking of cancer in the form of infinite games

3. Nurturing ambiguity and taking high stake decisions

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this podcast, you will learn about - 

1. Are metaphors like “infinite games” valid for approaching cancer care? 

2. How to develop your strategy when everything seems uncertain and unclear 

3. The importance of rethinking assumptions

Show notes:

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this episode, you’ll hear about - 

1. What does the caregiver ecosystem really mean

2. Second order effects of being diagnosed with cancer

3. Exploring different strategies to grapple with the crisis

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Meet Samira, founder of Manta Cares and here about her breast cancer story.

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!⁠

In this episode you will learn - 

1. Emotional, psychological and financial cost of being diagnosed with cancer 

2. Principles of building a community  of cancer survivors and caregivers 

3. Processing suffering and becoming anti-fragile

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.