4 ms·

Call me crazy, but I'm one of those people who wants their medical information to be harder to get, not easier. I don't want any company to have it at all, inc

by vcryan 4y ago

Call me crazy, but I'm one of those people who wants their medical information to be harder to get, not easier. I don't want any company to have it at all, including hospitals, etc. I'd prefer to come in with a thumb drive with medical information in a human readable format and that's it. Or you know, a folder with some papers in it.

jdoss 4y ago
I want it to be easier for me to get. I want software that will let me collect my own health data in a medium I can control (selfhosted or SaaS) were I can give grant and remove access to providers. This way they can into my system and look at my data but not pull it down into their systems.
version_five 4y ago
There are two issues though. One is security, the second is the actual protocol for sharing data. As an aside I don't really like to see products like this either, because I don't like the idea of normalizing sharing health information. Unfortunately, the data you share will almost exclusively be used against your interests. Your Fitbit for example, doctors aren't going to care, but insurance companies will find ways to use it against you, and advertisers will find ways to "target" you, etc. But in principle, having a patchwork of data exchange protocols isn't going to change any of that. We need strong regulation (I would argue most 3rd party uses should just be illegal) and good security, but might as well have a standard data exchange protocol on the off change there's a legitimate use for it
- celsinga 4y ago
  We definitely understand your concerns here, and appreciate your thoughts in regards to sharing private health information. One thing to note is almost all of our customers so far are healthtech and healthcare companies that are primarily interested in improving the outcomes of their own patients. Wearables and consumer health data aside, access to medical records in the US is currently a huge problem, as many individuals still aren't able to access their own medical records, largely due to gatekeeping by hospitals and other medical providers who use proprietary systems. We wanted to go after this problem with the main goal of improving patient outcomes at the end of the day, and provide a legitimate alternative to the proprietary players that exist in the space who make access to data much more difficult and expensive than it should be.
celsinga 4y ago
Appreciate your perspective on this! We definitely understand the concern for not wanting anyone to have access to your medical data without your explicit consent, so that's why we're approaching this with the idea of ultimately leaving the individual in charge at the end of the day. It should really be up to the individual if they want to allow access to their data, but if they do, it should be as seamless as possible for them. This is exactly the future we see for personal health data, and is the sort of system we would want ourselves. Of course this should be done in a secure and private manner as well, which is why we're HIPAA & SOC 2 compliant, and are only a pass-through solution with no actual data being stored.
dinkumthinkum 4y ago
Well, you did invite people to call you crazy. I think you’d be in a statistically insignificant minority even among tech type people.
eternityforest 4y ago
Medical errors kill many people every year. I don't think I have any relevant allergies or anything, but if I did, I would want the hospital to have 100% instant access to every piece of data
- celsinga 4y ago
  That's the way we see it too, as medical errors are one of the leading causes of death in the US alone (https://pubmed.ncbi.nlm.nih.gov/28186008/ https://pubmed.ncbi.nlm.nih.gov/28186008/). We see this as a huge problem that still needs addressing, and improving data-sharing standards and access is one way to go about it: https://www.cbc.ca/news/canada/health-data-canada-sharing-information-1.6652770 https://www.cbc.ca/news/canada/health-data-canada-sharing-in...

by vcryan 4y ago

jdoss 4y ago

I want it to be easier for me to get. I want software that will let me collect my own health data in a medium I can control (selfhosted or SaaS) were I can give grant and remove access to providers. This way they can into my system and look at my data but not pull it down into their systems.

version_five 4y ago

There are two issues though. One is security, the second is the actual protocol for sharing data. As an aside I don't really like to see products like this either, because I don't like the idea of normalizing sharing health information. Unfortunately, the data you share will almost exclusively be used against your interests. Your Fitbit for example, doctors aren't going to care, but insurance companies will find ways to use it against you, and advertisers will find ways to "target" you, etc. But in principle, having a patchwork of data exchange protocols isn't going to change any of that. We need strong regulation (I would argue most 3rd party uses should just be illegal) and good security, but might as well have a standard data exchange protocol on the off change there's a legitimate use for it

celsinga 4y ago
We definitely understand your concerns here, and appreciate your thoughts in regards to sharing private health information. One thing to note is almost all of our customers so far are healthtech and healthcare companies that are primarily interested in improving the outcomes of their own patients. Wearables and consumer health data aside, access to medical records in the US is currently a huge problem, as many individuals still aren't able to access their own medical records, largely due to gatekeeping by hospitals and other medical providers who use proprietary systems. We wanted to go after this problem with the main goal of improving patient outcomes at the end of the day, and provide a legitimate alternative to the proprietary players that exist in the space who make access to data much more difficult and expensive than it should be.

celsinga 4y ago

Appreciate your perspective on this! We definitely understand the concern for not wanting anyone to have access to your medical data without your explicit consent, so that's why we're approaching this with the idea of ultimately leaving the individual in charge at the end of the day. It should really be up to the individual if they want to allow access to their data, but if they do, it should be as seamless as possible for them. This is exactly the future we see for personal health data, and is the sort of system we would want ourselves. Of course this should be done in a secure and private manner as well, which is why we're HIPAA & SOC 2 compliant, and are only a pass-through solution with no actual data being stored.

dinkumthinkum 4y ago

Well, you did invite people to call you crazy. I think you’d be in a statistically insignificant minority even among tech type people.

eternityforest 4y ago

Medical errors kill many people every year. I don't think I have any relevant allergies or anything, but if I did, I would want the hospital to have 100% instant access to every piece of data

celsinga 4y ago
That's the way we see it too, as medical errors are one of the leading causes of death in the US alone (https://pubmed.ncbi.nlm.nih.gov/28186008/ https://pubmed.ncbi.nlm.nih.gov/28186008/). We see this as a huge problem that still needs addressing, and improving data-sharing standards and access is one way to go about it: https://www.cbc.ca/news/canada/health-data-canada-sharing-information-1.6652770 https://www.cbc.ca/news/canada/health-data-canada-sharing-in...