January 9, 2023
The future of patient data with cancer survivor and healthcare entrepreneur Jennifer Hinkel
We are kicking off 2023 with the fabulous cancer survivor, healthcare entrepreneur and thought leader, Jennifer Hinkel. As a survivor of Stage III Hodgkin Lymphoma, Jennifer has a special interest in oncology innovation as a cancer survivor. She is passionate about using data to improve the lives of cancer patients, and also making sure that patients are aware and compensated for the use of their data.
Advice. What advice would adult Jennifer give to her 17-year-old self about being diagnosed with cancer?
Individual Patient Data. The importance and value of patient data.
Bank for data. Building the bank for patient data.
Economic value of your data. Henrietta Lacks’ cell line and its incredible impact on science relate to digital patient data today.
About our guest
About our guest: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.
Watch the video of our phenomenal conversation.
Samira and Jenifer talking about the importance of patient data.
7 mins 22 secs: Walking through a portal. 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, it's a world full of a lot of scary things. Although it's also a world full of like a lot of really smart people and people who are out there trying to be helpful and to make the experience better for people. 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 seconds: Getting compensated of your data. 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: Story of Henrietta Lacks. 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 recognized, that this woman was never really compensated for the contribution that her genetic material made to science. I think that we will start to have that same idea on the digital data. Just because it's in a digitized format, I think doesn't make it any less personal or unique to us really. This data is just the output of your medical procedure or what your body produced.