42 min
Episode 6: Understanding Community, Collaboration and Caregiving with the Chair and Chief Executive Officer of Translating Research Across Communities (TRAC) Paula Kim - PART I Patient from Hell
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- Medicine
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.
---
Support
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.
---
Support
42 min