My experience comes from working as a medical assistant and nursing student in the US.
Medical records. When a patient seeks care from a new provider the practitioner often needs access to their complete history to treat conditions that may appear trivial at first glance, but might be a symptom of something more serious.
The current medical record system in the US allows for a patient to hop from care provider to care provider, selectively disclosing their medical history so that no single provider has a complete medical record. This design has been preserved from a time before a universal medical records were possible in order to address valid patient privacy concerns, but from a providers perspective it makes practicing medicine far more dangerous.
If a patient presents for a sinus infection and is prescribed a penicillin derivative without ever disclosing that they are allergic, and then the patient dies of an anaphylactic reaction, the patient’s family is likely to sue for malpractice. Did the patient simply forget to mention they were allergic or did they decide their last reaction was so long ago that they were no longer allergic? It doesn’t matter, the family’s lawyers will scrounge for a medical record, or several, documenting the penicillin allergy. Even if the practitioner’s documentation of the visit is perfect, and the patient’s family loses the case, it’s still a soul-crushing and expensive experience for everyone involved.
In another situation a patient with an opioid addiction may visit many providers in their region in order to receive multiple prescriptions for painkillers, this is very common.
Without a seamless medical record system these and other preventable outcomes will continue to cause misery to patients and providers. I believe a central medical record database would drastically improve the quality of healthcare in the US.
Decentralization of medical records is a single factor contributing to the fact that US doctors and nurses commit suicide at a rate about three times higher than the general population.
While I’m on the soap box: Medicare for all is the single most important change to push for. If you live in a country with socialist healthcare, please protect it.
Couldn’t medical records be normalized (standardization of data structures), but the data hold by citizens or local administrative governments (and later in a decentralized storage system¹ ? (with e2e encryption and access control by the holder or some emergency mechanism)
This way, you wouldn’t have a single organization storing all the medical data (and thus having a lot of power), but every medical practitioner or organization could access medical records the same way and common software could be developed
¹disclaimer: not blockchain, I think blockchain is irrelevant for most applications
I think a centralized database is the simplest and most politically feasible with current technology. In theory users could hold all the data on their own device, but this introduces additional complexity and problems. For instance, many of the notes that are included in a medical record are not meant to be seen by the patient e.g. “At presentation patient stated pain in lower back, then stated the pain was in their upper back, then stated pain was in left leg. Inconsistent report, pain medication not prescribed. Patient’s Medical Record Number flagged for future providers to be aware of possible substance abuse”
If the user holds this data themselves, then they will presumably be able to read that data, and that will make providers jobs that much more uncomfortable knowing the patient will likely read the sensitive information that needs to be stated, but has a high likelihood of making patients uncomfortable and angry. If the user holds this data they will also be able to edit and delete crucial parts of their medical record and without a proper medical record providers can not administer proper care.
What is currently happening is that Electronic Health Record software companies are starting to build these centralized databases / make sharing easy between health systems using the same EHR software e.g. EPIC ShareEverywhere.
I believe a publicly accountable institution should be responsible for managing a central repository, not a private company, and I believe that at the current time a centralized collection of medical data is possible while a decentralized, but seamless, database has yet to be proven.
In my country (france), such a service is currently deployed by the public healthcare organization.
After the digitization of public administrative services by every state (which is mandatory in the european union), the EU will surely make it mandatory to have interoperability between the different health systems.
What is nice with this approach is that each state keeps control over their citizen’s data, but the mandatory interoperability (for administrative documents, and hopefully healthcare later) will make it easy for every citizen to move from one country to another.
It will be federated rather than decentralized, though, and I think that it should become way more decentralized so that every citizen really have a control over their data. I don’t think we can trust governments of nations. I agree that a reliable decentralized database approach doesn’t exist yet.
For the issue of “records that is not meant to be seen” I don’t think that it should exist. I think everybody have the right to be informed about their health¹. You can forbid modifications of the medical record by using merkle trees and signature, but I don’t see any reason to hide this information from the patient.
For the example, if the person is told that they have the same comportment as an addict, don’t you think they will be more inclined to seek for help if they really have an addiction issue ? (provided this help is free and accessible, of course)
¹ if the person is recognized as responsible of themself
My experience comes from working as a medical assistant and nursing student in the US.
Medical records. When a patient seeks care from a new provider the practitioner often needs access to their complete history to treat conditions that may appear trivial at first glance, but might be a symptom of something more serious.
The current medical record system in the US allows for a patient to hop from care provider to care provider, selectively disclosing their medical history so that no single provider has a complete medical record. This design has been preserved from a time before a universal medical records were possible in order to address valid patient privacy concerns, but from a providers perspective it makes practicing medicine far more dangerous.
If a patient presents for a sinus infection and is prescribed a penicillin derivative without ever disclosing that they are allergic, and then the patient dies of an anaphylactic reaction, the patient’s family is likely to sue for malpractice. Did the patient simply forget to mention they were allergic or did they decide their last reaction was so long ago that they were no longer allergic? It doesn’t matter, the family’s lawyers will scrounge for a medical record, or several, documenting the penicillin allergy. Even if the practitioner’s documentation of the visit is perfect, and the patient’s family loses the case, it’s still a soul-crushing and expensive experience for everyone involved.
In another situation a patient with an opioid addiction may visit many providers in their region in order to receive multiple prescriptions for painkillers, this is very common.
Without a seamless medical record system these and other preventable outcomes will continue to cause misery to patients and providers. I believe a central medical record database would drastically improve the quality of healthcare in the US.
Decentralization of medical records is a single factor contributing to the fact that US doctors and nurses commit suicide at a rate about three times higher than the general population.
While I’m on the soap box: Medicare for all is the single most important change to push for. If you live in a country with socialist healthcare, please protect it.
Couldn’t medical records be normalized (standardization of data structures), but the data hold by citizens or local administrative governments (and later in a decentralized storage system¹ ? (with e2e encryption and access control by the holder or some emergency mechanism)
This way, you wouldn’t have a single organization storing all the medical data (and thus having a lot of power), but every medical practitioner or organization could access medical records the same way and common software could be developed
¹disclaimer: not blockchain, I think blockchain is irrelevant for most applications
I think a centralized database is the simplest and most politically feasible with current technology. In theory users could hold all the data on their own device, but this introduces additional complexity and problems. For instance, many of the notes that are included in a medical record are not meant to be seen by the patient e.g. “At presentation patient stated pain in lower back, then stated the pain was in their upper back, then stated pain was in left leg. Inconsistent report, pain medication not prescribed. Patient’s Medical Record Number flagged for future providers to be aware of possible substance abuse”
If the user holds this data themselves, then they will presumably be able to read that data, and that will make providers jobs that much more uncomfortable knowing the patient will likely read the sensitive information that needs to be stated, but has a high likelihood of making patients uncomfortable and angry. If the user holds this data they will also be able to edit and delete crucial parts of their medical record and without a proper medical record providers can not administer proper care.
What is currently happening is that Electronic Health Record software companies are starting to build these centralized databases / make sharing easy between health systems using the same EHR software e.g. EPIC ShareEverywhere.
I believe a publicly accountable institution should be responsible for managing a central repository, not a private company, and I believe that at the current time a centralized collection of medical data is possible while a decentralized, but seamless, database has yet to be proven.
In my country (france), such a service is currently deployed by the public healthcare organization. After the digitization of public administrative services by every state (which is mandatory in the european union), the EU will surely make it mandatory to have interoperability between the different health systems.
What is nice with this approach is that each state keeps control over their citizen’s data, but the mandatory interoperability (for administrative documents, and hopefully healthcare later) will make it easy for every citizen to move from one country to another.
It will be federated rather than decentralized, though, and I think that it should become way more decentralized so that every citizen really have a control over their data. I don’t think we can trust governments of nations. I agree that a reliable decentralized database approach doesn’t exist yet.
For the issue of “records that is not meant to be seen” I don’t think that it should exist. I think everybody have the right to be informed about their health¹. You can forbid modifications of the medical record by using merkle trees and signature, but I don’t see any reason to hide this information from the patient. For the example, if the person is told that they have the same comportment as an addict, don’t you think they will be more inclined to seek for help if they really have an addiction issue ? (provided this help is free and accessible, of course)
¹ if the person is recognized as responsible of themself