Hi Steve: I have been thinking about this post for some time, and then I posted this today on Jessica Rose's Substack and now here on yours. Excerpted are some well-considered thoughtful and constructive opinions also shared with Jessica and followers: "Steve Kirsch sent around a Substack post a month or so ago about a young professor at UCSF in the bench sciences who wanted to start an independent VAERS roster. I will call that idea "Citizen VAERS," or CVAERS for short. I was skeptical about this particular effort for many reasons: It is a big project. It seemed naive. No prospectus was provided or listing of PI skills to instill confidence or provide feedback. Such an important undertaking should be a team approach with a lot of thought going into the construction of the database prior to receiving data. You are asking a lot of people to trust, take time out to enter and re-enter sensitive data. As an ethical point, it is a sacred duty to do it right. So how is data entered? Can some folks just call a hotline to get an interview format for data entry such as for busy health professionals, disabled, elderly and those without computer skills? When self entry on a form, how translated to database? How do you prevent scams and bots? Rules for data cleaning? Who does helpful tasks such as data cleaning? How about the coding scheme for qualitative data and how is that translated to the database? A team should devise the cleaning, coding, analysis and reporting tasks. Will reports be monthly? How funded? Webcasts should be provided at regular intervals for project development and data reporting progress. In my world this begins to look like a sizeable contract. If at university, how do we prevent a university from censorship and changing its mind, then halting or undermining the project? IRB approval and monitoring would be required. But is it required in citizen science? I have wondered that for a long time as research has now become the wild west of ethics. But if you want to publish research using human subject data in peer-reviewed journals you need the IRB approval from some qualified entity-and this can be a contractor to read and review your ethics proposal, monitor progress, and who will meet and advise on your behalf if you come across a violation. One large ethical caveat is that anyone starting such a project must have an ethical duty to finish it either themselves or to pass it on in a timely manner into competent hands. You cannot mislead a number of vaccine injury victims and their friends and family into false hope. Legal oversight, and data security are paramount. Political attacks and pushback should be expected and planned for. Facebook removed a vaccine injury reporting group without notice or ability for the group to retrieve its data for use elsewhere. So trust has been broken and people are re-victimized. This project could end up becoming a standard and Go To place for reporting if done right. It could attract major independent funding if the prototype is promising and well-received. As such, there should be a board of advisors like a company has as well as its executive management team. This doesn't have to be unreasonably sizeable but a good start. The database itself should have many features including uploading of records, methods for providing unique ID to the submitter with contact information but still de-identifying records for protection. Trajectory for follow up and comment should be provided for each case. The merging of data from other useful databases could be quite possible and helpful-- like Craig Paardekoper's well-developed databases on batch and lot toxicity. A literature review scan should turn up many good suggestions on what is wrong or right with VAERS and the systems in other countries--to better inform the CVAERS project from previous lessons learned. The IT issues and hardware software choices are critical to get right up front. Even what you call the database and its project name may need some branding and marketing attention, as participation and uptake is key to the success of the project. I have many skills and experience in this area, and have overseen the implementation and management of quite a few research projects, multisite studies and randomized trials on a large scale, grants and contracts, as well as prepared IRB's and sat as a member on an IRB committee for a term. So I say this out of respect for all the requirements involved for a successful and credible project. That being said, I would love to help make that happen and be part of the team. My husband is a highly accomplished and recognized marketing and social science professor who could provide some input along those marketing angles. I know these comments make the project seem large, but it could start its prototype by just focusing on a symptom domain or single organ- like eyes or eyes + brain issues with vision involved... Substack is becoming such a great place, but we need a feature for "Interstack"--when two threads should interact...".
So I am hoping that this thread for Steve's Post and some of Jessica Rose's posts can encourage collaboration. I am keenly interested in showing the utility of a new CVAERS, especially in previously neglected vaccine AEs such as eye issues or in the long-term problems of autoimmunity. A good CVAERS might encourage people with no perceived vax problems to report just that--that could be a useful innovation. Finally, it would be helpful for fellow Substackers to have a place they can post a longer bio with fields for skill sets, and urls to places like ResearchGate and Linked IN so we can learn more about each other. Perhaps key Substack Authors could get those upgrades made to the platform.
There are so many eager to help or to donate, but these choices should be made wisely to preserve energy, motivation and resources.
Donated. Thanks for all the suggested actions here and your post on New Year's day. I'm tired of waiting on the sidelines and hoping. I read and consider every suggestion and am starting to take action
donated to this last year and I'm regretting it with all the garbage UCSF is now putting in my mailbox
Hi! Do we have an update on this project? Thank you!
Hi Steve: I have been thinking about this post for some time, and then I posted this today on Jessica Rose's Substack and now here on yours. Excerpted are some well-considered thoughtful and constructive opinions also shared with Jessica and followers: "Steve Kirsch sent around a Substack post a month or so ago about a young professor at UCSF in the bench sciences who wanted to start an independent VAERS roster. I will call that idea "Citizen VAERS," or CVAERS for short. I was skeptical about this particular effort for many reasons: It is a big project. It seemed naive. No prospectus was provided or listing of PI skills to instill confidence or provide feedback. Such an important undertaking should be a team approach with a lot of thought going into the construction of the database prior to receiving data. You are asking a lot of people to trust, take time out to enter and re-enter sensitive data. As an ethical point, it is a sacred duty to do it right. So how is data entered? Can some folks just call a hotline to get an interview format for data entry such as for busy health professionals, disabled, elderly and those without computer skills? When self entry on a form, how translated to database? How do you prevent scams and bots? Rules for data cleaning? Who does helpful tasks such as data cleaning? How about the coding scheme for qualitative data and how is that translated to the database? A team should devise the cleaning, coding, analysis and reporting tasks. Will reports be monthly? How funded? Webcasts should be provided at regular intervals for project development and data reporting progress. In my world this begins to look like a sizeable contract. If at university, how do we prevent a university from censorship and changing its mind, then halting or undermining the project? IRB approval and monitoring would be required. But is it required in citizen science? I have wondered that for a long time as research has now become the wild west of ethics. But if you want to publish research using human subject data in peer-reviewed journals you need the IRB approval from some qualified entity-and this can be a contractor to read and review your ethics proposal, monitor progress, and who will meet and advise on your behalf if you come across a violation. One large ethical caveat is that anyone starting such a project must have an ethical duty to finish it either themselves or to pass it on in a timely manner into competent hands. You cannot mislead a number of vaccine injury victims and their friends and family into false hope. Legal oversight, and data security are paramount. Political attacks and pushback should be expected and planned for. Facebook removed a vaccine injury reporting group without notice or ability for the group to retrieve its data for use elsewhere. So trust has been broken and people are re-victimized. This project could end up becoming a standard and Go To place for reporting if done right. It could attract major independent funding if the prototype is promising and well-received. As such, there should be a board of advisors like a company has as well as its executive management team. This doesn't have to be unreasonably sizeable but a good start. The database itself should have many features including uploading of records, methods for providing unique ID to the submitter with contact information but still de-identifying records for protection. Trajectory for follow up and comment should be provided for each case. The merging of data from other useful databases could be quite possible and helpful-- like Craig Paardekoper's well-developed databases on batch and lot toxicity. A literature review scan should turn up many good suggestions on what is wrong or right with VAERS and the systems in other countries--to better inform the CVAERS project from previous lessons learned. The IT issues and hardware software choices are critical to get right up front. Even what you call the database and its project name may need some branding and marketing attention, as participation and uptake is key to the success of the project. I have many skills and experience in this area, and have overseen the implementation and management of quite a few research projects, multisite studies and randomized trials on a large scale, grants and contracts, as well as prepared IRB's and sat as a member on an IRB committee for a term. So I say this out of respect for all the requirements involved for a successful and credible project. That being said, I would love to help make that happen and be part of the team. My husband is a highly accomplished and recognized marketing and social science professor who could provide some input along those marketing angles. I know these comments make the project seem large, but it could start its prototype by just focusing on a symptom domain or single organ- like eyes or eyes + brain issues with vision involved... Substack is becoming such a great place, but we need a feature for "Interstack"--when two threads should interact...".
So I am hoping that this thread for Steve's Post and some of Jessica Rose's posts can encourage collaboration. I am keenly interested in showing the utility of a new CVAERS, especially in previously neglected vaccine AEs such as eye issues or in the long-term problems of autoimmunity. A good CVAERS might encourage people with no perceived vax problems to report just that--that could be a useful innovation. Finally, it would be helpful for fellow Substackers to have a place they can post a longer bio with fields for skill sets, and urls to places like ResearchGate and Linked IN so we can learn more about each other. Perhaps key Substack Authors could get those upgrades made to the platform.
There are so many eager to help or to donate, but these choices should be made wisely to preserve energy, motivation and resources.
Done, hope it makes a difference ASAP.
Did it!
Is there a way to donate without using this online form?
did it!
Donation made
Donation made.
Be sure to donate 'in memory of' Anthony Fauci...
Donation given!
Tried to send a donation from outside the US, but there is no possibility to select her specific fund.
Just made a $250 donation and hope other will also. We need to get to the truth!
Donated. Thanks for all the suggested actions here and your post on New Year's day. I'm tired of waiting on the sidelines and hoping. I read and consider every suggestion and am starting to take action
Just donated. Thank you for all you do! AND for giving us actionable things we can do to help.
it shows starting at $ 50 but at bottom you can put in for $ 25.
I'm turned off by the fact that the $ 250 was already checked before I changed it to $ 25