3 ms·

I'm very sorry for what she, you and your family are going through, I really hope she'll be OK. We [1] are one of the companies who are trying to make "this" h

I'm very sorry for what she, you and your family are going through, I really hope she'll be OK. We [1] are one of the companies who are trying to make "this" happen. "This" meaning: providing a holistic, complete health record for patients (including appointments, radiology, lab results, etc.). It is not trivial: one of the largest failed IT projects in history is the digital integration of various NHS systems (https://www.theguardian.com/society/2013/sep/18/nhs-records-system-10bn https://www.theguardian.com/society/2013/sep/18/nhs-records-...). Our goal is to provide patients complete access to and full control over [2] their medical data. So we're in the process of building what you are proposing, but it's not a fast process. It is primarily not a technical problem -- it is a problem of trust, coordination, aligning incentives, legal issues, etc. [1]: https://patientsknowbest.com https://patientsknowbest.com [2]: laws and regulations don't allow 100% control

robga 4y ago
I don’t doubt your sincerity and commitment but I find PKB a real problem. I don’t want this 3rd party to hold my information. I found it difficult to de-register on attempt 1 through my GP. I see now you can email PKB support to do it directly as a patient so I’ll give that an attempt. But frankly services without an automated online de-register smell. Edit: it seems this will only remove my email from being contacted and my data will still be held. (Yes, I know it’s encrypted etc). I suspect I’ve already lost. My GP and the hospitals I regularly visit must be users. I have no choice. The business model rattles me. I understand and accept the NHS using private suppliers for IT (eg Azure, design and dev partners). But a model when I’m effectively a customer of the 3rd party is not a situation I’d choose to be in.
- sz4kerto 4y ago
  I understand your distrust. I also agree that for most of the reasonable requests you should not need to email any service provider, including us. We're working of fixing that. The reason why it's not that straightforward (not just a simple delete operation) is that data about you might not be data that only you have control over. That's not something I agree with, it's just the law. So "deletion" is actually a very complex task to get right. One of the reasons 3rd parties like us hold your data is because apparently private sector is often more capable of iterating and implementing working systems at lower cost than governments. I am also often torn on what should be publicly owned and what should not, but the governments' track records show that it is not trivial to run engineering teams under direct state control.
  - robga 4y ago
    Yes, the private sector IS often more capable of iterating and implementing working systems at lower cost than governments. Government and the private sector can work together on large scale core national infrastructure projects where the assets are owned by the public and are even published as open source. No need for a state controlled engineering team. I know this to be true, as it has been my job for many years to make it happen. Hence the original comment that it’s the business model that grates - NHS could have engaged and remunerated a supplier without selling me as a customer. The 2 out of 5 trustpilot score shows I’m not alone in my thinking.
    - sz4kerto 4y ago
      Maybe interesting insight: trustpilot scores can almost exclusively be attributed to whether a patient has data in the system about them or not. If a person does get data, then it's a 5. If a person has an empty record, it's a 1. And that only, exclusively depends on whoever is holding the data, eg. the trust, hospital, etc. (I don't think you're sold, but maybe this is not the best forum to discuss this. Happy to continue through mate at companydomain.)

robga 4y ago

I don’t doubt your sincerity and commitment but I find PKB a real problem. I don’t want this 3rd party to hold my information. I found it difficult to de-register on attempt 1 through my GP. I see now you can email PKB support to do it directly as a patient so I’ll give that an attempt. But frankly services without an automated online de-register smell. Edit: it seems this will only remove my email from being contacted and my data will still be held. (Yes, I know it’s encrypted etc). I suspect I’ve already lost. My GP and the hospitals I regularly visit must be users. I have no choice. The business model rattles me. I understand and accept the NHS using private suppliers for IT (eg Azure, design and dev partners). But a model when I’m effectively a customer of the 3rd party is not a situation I’d choose to be in.

sz4kerto 4y ago
I understand your distrust. I also agree that for most of the reasonable requests you should not need to email any service provider, including us. We're working of fixing that. The reason why it's not that straightforward (not just a simple delete operation) is that data about you might not be data that only you have control over. That's not something I agree with, it's just the law. So "deletion" is actually a very complex task to get right. One of the reasons 3rd parties like us hold your data is because apparently private sector is often more capable of iterating and implementing working systems at lower cost than governments. I am also often torn on what should be publicly owned and what should not, but the governments' track records show that it is not trivial to run engineering teams under direct state control.
- robga 4y ago
  Yes, the private sector IS often more capable of iterating and implementing working systems at lower cost than governments. Government and the private sector can work together on large scale core national infrastructure projects where the assets are owned by the public and are even published as open source. No need for a state controlled engineering team. I know this to be true, as it has been my job for many years to make it happen. Hence the original comment that it’s the business model that grates - NHS could have engaged and remunerated a supplier without selling me as a customer. The 2 out of 5 trustpilot score shows I’m not alone in my thinking.
  - sz4kerto 4y ago
    Maybe interesting insight: trustpilot scores can almost exclusively be attributed to whether a patient has data in the system about them or not. If a person does get data, then it's a 5. If a person has an empty record, it's a 1. And that only, exclusively depends on whoever is holding the data, eg. the trust, hospital, etc. (I don't think you're sold, but maybe this is not the best forum to discuss this. Happy to continue through mate at companydomain.)