Episode 18: The future of patient data with young adult cancer survivor and healthcare consultant Jennifer Hinkel
1.What advice would adult Jennifer give to her 17 year old self about being diagnosed with cancer?
2. The importance and value of patient data
3. How does the recent recognition of Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today
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About our guests
Jennifer Hinkel is an oncology market access and health economics leader with experience in consulting, global pharma and biotech, health policy, and health care startups. She has held management and executive roles at companies including National Comprehensive Cancer Network, Roche UK, Roche Argentina, Genentech, and Caris Life Sciences. She is a Managing Director of The Data Economics Company where she leads commercialization of the Lydion Engine in life sciences and healthcare applications, and is a Founding Partner at Sigla Sciences, a market access firm.
Ms. Hinkel holds degrees from the Georgia Institute of Technology (BS International Affairs) and the London School of Economics (MSc International Health Policy), and is a part-time doctoral student at the University of Oxford pursuing a DPhil in Evidence Based Health Care. She has lectured in Health Systems and Health Economics at Penn State University and Arcadia University, holds patents in healthcare technology, and has published numerous articles and abstracts related to market access and oncology health services research. As a survivor of Stage III Hodgkin Lymphoma, Ms. Hinkel has a special interest in oncology innovation as a cancer survivor. To support the broader survivor and oncology community, Ms. Hinkel founded Resilience Racing, the first all-cancer-survivor sailing team, and also launched the 40 Under 40 in Cancer annual awards program.
Watch the video of our episode on YouTube
7 minutes 22 seconds:
One of the things I recall most strongly is this feeling that I walked through a door, a portal to a different world. No one around me had seen that world. They didn't even know that that world existed.And it is not a super pleasant world, you know, it's a world full of a lot of like scary things. Although it's also a world full of like a lot of really smart people and people doing research and people who are out there trying to be helpful and trying to make the experience better for people that have this unfortunate thing happen to them.So I think that the most important thing to say would be: you might feel like you're the only one that's gone through this, but there are actually other people out there going through the same thing.
18 minutes 37 second:
I philosophically believe that this is data that is generated by you, a patient. Yes, you plus an X ray machine or you plus a doctor. Most of us don't walk around just spouting genetic sequences out of the air, but there has to be some science applied. But really that data is yours.It's pretty unique to you, and that should belong to you. And if other people are using it, especially if they're using it for a business purpose,I think you should get to share in that.
27 minutes 27 seconds:
So I think of the story of um you're probably familiar with this, others might not be, this woman Henrietta Lacks, who had cells taken. And her cell line has become a mainstay of biotech research for decades and decades. Only recently it was kind of recognized, that hey this woman was never really compensated for the contribution that her genetic material essentially made to science. I think that will start to have that same idea on the digital stuff. Just because it's in a digitized format I think doesn't make it any less personal or or unique to us really. The digital is just the output of your medical procedure or what your body produced.
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