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This is what we do! I'm at Patients Know Best; we've been live for a few years now, and the momentum continues to grow -- this is an issue that is hitting a ti

by jtheory 12y ago

This is what we do! I'm at Patients Know Best; we've been live for a few years now, and the momentum continues to grow -- this is an issue that is hitting a tipping point. The article touches on several important aspects of working in this space -- mainly, the benefits are real (even for people who aren't able to diagnose their own brain tumors), but there is cultural resistance to giving patients the "real" data. We've worked with medical professionals who are seriously uneasy about giving patients access to their own records -- sometimes for more sensible reasons ("a patient could easily misinterpret what this result means without context") but also fears that just don't materialize in reality (like "patients will bombard me with questions" -- as discussed in the OP). Some of the resistance is curiously connected to the legal protections that healthcare professionals need to enforce on behalf of the patient. They're actively trained to follow laws that seriously restrict data-sharing, insecure storage, etc... and it takes a while for it to click that this is actually the patient's data, and the patient is the one person who has more right to it than anyone.

pimlottc 12y ago
This sounds great, so I went to check it out. A few issues I noticed on the site - * The text on the first slideshow image cuts off abruptly: "Patients Know Best ('PKB') is the most integrated patient portal and health information exchange. PKB is live in over" * The patient signup link is hard to find. I left the patient page [1] thinking it was just an info page before realizing that the sign up link is there, all the way at the bottom after the letter from the CEO and 6 videos * It's not very clear what regions you serve. Mentions of HIPAA led me to believe you might serve the US, but entering my California zip-code on the customers map [2] gives me results in Lithuania, the Netherlands, Germany and the UK. 1: https://www.patientsknowbest.com/patients.html https://www.patientsknowbest.com/patients.html 2: https://www.patientsknowbest.com/customers.html https://www.patientsknowbest.com/customers.html

by jtheory 12y ago

pimlottc 12y ago

This sounds great, so I went to check it out. A few issues I noticed on the site - * The text on the first slideshow image cuts off abruptly: "Patients Know Best ('PKB') is the most integrated patient portal and health information exchange. PKB is live in over" * The patient signup link is hard to find. I left the patient page [1] thinking it was just an info page before realizing that the sign up link is there, all the way at the bottom after the letter from the CEO and 6 videos * It's not very clear what regions you serve. Mentions of HIPAA led me to believe you might serve the US, but entering my California zip-code on the customers map [2] gives me results in Lithuania, the Netherlands, Germany and the UK. 1: https://www.patientsknowbest.com/patients.html https://www.patientsknowbest.com/patients.html 2: https://www.patientsknowbest.com/customers.html https://www.patientsknowbest.com/customers.html