Patient Power: Local couple’s website provides resources for cancer patients, care partners and others
After starting a community for patients to learn more about the latest drugs, studies and other information, Andrew Schorr was diagnosed with chronic lymphocytic leukemia.
About 25 years later, with a second diagnosis of myelofibrosis about 10 years ago, Andrew and his wife Esther are now based in Del Mar and continue their original mission through a website called Patient Power (go to https://patientpower.info).
“I think there’s a meaning in things,” said Schorr, 71. “Why were we in a sense doing medical journalism and then I became a patient myself? Why did I survive? I think it was to keep doing this.”
Before moving to Del Mar earlier this year, the Schorrs lived in Carlsbad for about five years.
Before that they lived in Seattle, where they raised their children.
“Our hope is that living here we can build more of a bridge with more of the exciting science that is in development in San Diego County,” Andrew said.
Patient Power provides resources for cancer patients, care partners and others for education and advocacy, according to its website. The goal is to help them find the best health care options with the help of an online library of programs for various health conditions. Patient Power also has interviews with medical experts, researchers and other guests.
Andrew worked in media before entering the health care space. While covering a health care convention, he said he realized that there were no resources for patients.
“It became clear that there was nothing for patients, other than ‘we’re going to cut you open or we’re going to give you this shot or you’re going to take this pill.’ And there definitely wasn’t anything for family members,” he said. “That’s the gap we fill.”
Esther said it was “traumatic” to learn about Andrew’s initial diagnosis before they started using his experience in their mission to instill “patient power” in others.
“I think one thing that sets our organization and the work we do apart is that because we are a couple dealing with this over a long period of time, I’ve sort of carried the torch of what we call a care partner,” Esther said.
The two started offering resources to patients before the internet, but their efforts evolved into a website. Esther said there’s a “double-edged sword” for patients trying to find credible information online, where misinformation can easily proliferate.
“One of the things we try very hard to do, and we’ve cultivated that relationship with communities of patients, is ensure that the information that they come to Patient Power for is accurate and timely,” she said.
“We feel very blessed that somehow this was our calling,” Esther said.
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