I signed up to participate in AllOfUs maybe 5 years ago: I've given NIH my blood, spit, and data. I still trust the people that currently administer the program, but not the new guys at the top. Given what's happened to the privacy norms in the IRS, I'm trying to decide whether to pull out. I worry about the impact to medical research if there's a run on this data bank at the same time that funding for other projects that would be recruiting patients is disappearing.
JK - 7 months ago
Not under any administration at any time. History shows us that governments should always be limited in power not just when "the other guy" is in power because all government eventually go bad if the people let them. Sad but true.
Ray D - 7 months ago
Not any more and never again.
Gamble - 7 months ago
Under current administration, I select "hell, no".
JT - 7 months ago
I used to trust the handling of my personal data by the government but over the last 3 months, I’ve observed enough evidence to suggest that the usual safeguards for PPI and PHI may not be in place anymore. It remains to be seen if/when there will be more security breaches, cybersecurity attacks, hacks to my personal accounts, etc. but I know I am MUCH more vigilant. Basically, I no longer trust the current government. I also worry that IF there have been hacks of personal data, the information gathered on health history could be used to against patient in favor of big corporations, to deny care, etc. Time will tell, but it will be too late.
John Burch - 7 months ago
Uncomfortable with the government's handling of any personal information; govt already has too much and shows it can't be trusted. EHRs at hospitals and other medical institutions are, of course, far less secure, as shown by the ever-growing number of hacks and ransomware attacks. The govt's current "best effort" to solve the "interoperability problem" (called "TEFCA" for Trusted Exchange Framework and Common Agreement) only makes the EHR-based vulnerabilities worse, creating risks that rise to the national-security level.
I want all my medical PHI to be kept in a personal "data bank account" in a private institution that is run like a conventional bank. An account which I control, which contains my entire medical history, and which can be accessed by my docs (granted, they may need AI tools to effectively use all that information) and is also available for research with appropriate permissions handled by the bank institution on my behalf. I believe all this is as has been envisioned by the Health Record Banking Alliance (HRBA): https://www.healthbanking.org/hrba-overview.html
Bill Spooner - 7 months ago
You need a 3rd choice “Hell, No!”
Sharon - 7 months ago
Do not trust the government to lead anything to do with my PHI responsibly at the present time
Only if I get added to some cool Signal chats.
I signed up to participate in AllOfUs maybe 5 years ago: I've given NIH my blood, spit, and data. I still trust the people that currently administer the program, but not the new guys at the top. Given what's happened to the privacy norms in the IRS, I'm trying to decide whether to pull out. I worry about the impact to medical research if there's a run on this data bank at the same time that funding for other projects that would be recruiting patients is disappearing.
Not under any administration at any time. History shows us that governments should always be limited in power not just when "the other guy" is in power because all government eventually go bad if the people let them. Sad but true.
Not any more and never again.
Under current administration, I select "hell, no".
I used to trust the handling of my personal data by the government but over the last 3 months, I’ve observed enough evidence to suggest that the usual safeguards for PPI and PHI may not be in place anymore. It remains to be seen if/when there will be more security breaches, cybersecurity attacks, hacks to my personal accounts, etc. but I know I am MUCH more vigilant. Basically, I no longer trust the current government. I also worry that IF there have been hacks of personal data, the information gathered on health history could be used to against patient in favor of big corporations, to deny care, etc. Time will tell, but it will be too late.
Uncomfortable with the government's handling of any personal information; govt already has too much and shows it can't be trusted. EHRs at hospitals and other medical institutions are, of course, far less secure, as shown by the ever-growing number of hacks and ransomware attacks. The govt's current "best effort" to solve the "interoperability problem" (called "TEFCA" for Trusted Exchange Framework and Common Agreement) only makes the EHR-based vulnerabilities worse, creating risks that rise to the national-security level.
I want all my medical PHI to be kept in a personal "data bank account" in a private institution that is run like a conventional bank. An account which I control, which contains my entire medical history, and which can be accessed by my docs (granted, they may need AI tools to effectively use all that information) and is also available for research with appropriate permissions handled by the bank institution on my behalf. I believe all this is as has been envisioned by the Health Record Banking Alliance (HRBA): https://www.healthbanking.org/hrba-overview.html
You need a 3rd choice “Hell, No!”
Do not trust the government to lead anything to do with my PHI responsibly at the present time