4 ms·

Do you mind telling me your age? I can definitely say you're not the first person to say that. Early on I got that from a handful of people, along with a few ot

Do you mind telling me your age? I can definitely say you're not the first person to say that. Early on I got that from a handful of people, along with a few others asking what kind of information they'd have to share, and from there I decided to anonymize it based on HIPAA's Methods for De-identification. It is your business and responsibility. I agree with you, but I just wish everyone else felt the same way and acted as though they did. But the number's tell a different story. With that said, you can drive down the highway at 65 with your seatbelt on following all the rules. But if everyone else feels like driving against traffic then you're still at risk. And Im not saying to act reckless because everyone else is. Im saying to turn on your radio to listen to the traffic alerts. My question for you is, are you dead set on your stance or is there something that could change your mind? Some of the people that were opposed at first didn't want to share their identities while others felt they owed it to their partners to call them. The reason I ask is because you gave an exception.

jrowley 8y ago
I'm ~25.5 years old, and had a pretty healthcare oriented upbringing (I grew up in family of clinicians). So I guess I'm not 100% dead set, but pretty close. If this tool was used in a healthcare context, by healthcare professionals I might consent to it. For example, if as part of my annual check up I filled out a list of the people I had intercourse with (and their location, DOB, some more identifiers) and the last time I did so, etc. and it got entered into the EHR, and then EHR did some linking (Epic EHR already has Care Everywhere which links records across health systems), then at least the data would be in the system. From there it could automatically send alerts out, or perhaps better, it would alert your physician/clinician that you might be of higher risk. I don't think the clinician (or any human user, besides the user them self) should be able to see who their self reported partners are. So the above system makes the assumption that people have regular access to physicians, which is not a safe assumption. People who already have regular access should be getting screened by their clinician to see if they are at risk, and then tested. So I'm not sure it really has that much of a value add, and it certainly adds some complexity. I'm all for reducing the burden of STDs/STIs, but I'm not sure that a registry is the best approach, but I'm not a health policy person.
- soelost 8y ago
  When you said personal journal my thought was, this isn't a journal but it is a personal log. It's not like me or any other users can see it. I definitely want to move in the direction of users logging partners on their own, and clinicians sending out the alerts but don't know how to tackle that part so Im starting with user inputs since thats fairly straightforward. Why are you so accepting of it in the context of a healthcare system but not so much when its outside of that? Isn't a registry a registry no matter how slice it? And what features or safeguards would make you more comfortable with it outside of a healthcare system? BTW I really appreciate you letting me pick your brain.
  - jrowley 8y ago
    Hey - I don’t have time to reply to this atm with holidays and idk when the thread will die but feel free to email me. It’s in my profile

jrowley 8y ago

I'm ~25.5 years old, and had a pretty healthcare oriented upbringing (I grew up in family of clinicians). So I guess I'm not 100% dead set, but pretty close. If this tool was used in a healthcare context, by healthcare professionals I might consent to it. For example, if as part of my annual check up I filled out a list of the people I had intercourse with (and their location, DOB, some more identifiers) and the last time I did so, etc. and it got entered into the EHR, and then EHR did some linking (Epic EHR already has Care Everywhere which links records across health systems), then at least the data would be in the system. From there it could automatically send alerts out, or perhaps better, it would alert your physician/clinician that you might be of higher risk. I don't think the clinician (or any human user, besides the user them self) should be able to see who their self reported partners are. So the above system makes the assumption that people have regular access to physicians, which is not a safe assumption. People who already have regular access should be getting screened by their clinician to see if they are at risk, and then tested. So I'm not sure it really has that much of a value add, and it certainly adds some complexity. I'm all for reducing the burden of STDs/STIs, but I'm not sure that a registry is the best approach, but I'm not a health policy person.

soelost 8y ago
When you said personal journal my thought was, this isn't a journal but it is a personal log. It's not like me or any other users can see it. I definitely want to move in the direction of users logging partners on their own, and clinicians sending out the alerts but don't know how to tackle that part so Im starting with user inputs since thats fairly straightforward. Why are you so accepting of it in the context of a healthcare system but not so much when its outside of that? Isn't a registry a registry no matter how slice it? And what features or safeguards would make you more comfortable with it outside of a healthcare system? BTW I really appreciate you letting me pick your brain.
- jrowley 8y ago
  Hey - I don’t have time to reply to this atm with holidays and idk when the thread will die but feel free to email me. It’s in my profile