Return to Theoretical Simplified System using DIDO

1. The concept of medical data ownership. Does the data belong to the patient, the medical provider or both? This is a controversial subject in the USA and every state seems to have different rules¹⁾

   

   Figure 1: Map of Patients rights in the USA

   Europe on the other hand has a single unified approach to patient data under the General Data Protection Regulation (GDPR) ²⁾

   Table 1: Summary of patient rights within the EU.

   What RIght?	What does it mean for Patients?
   To access one’s own personal data	The right to access your own personal data is part of your fundamental right to data protection The right to access your medical record is explicitly mentioned in the new Regulation If you request a copy of the personal data being processed by a data controller about you, they have to provide it to you The Regulation encourages the establishment of remote ways to provide you with access, such as electronic health records The controller has the right to check your identity before providing you with the data
   Right to data portability/to transfer your data from one data controller to another	When you have consented to provide your health data, and that it is in a machine-readable format (e.g. in electronic form), you can request to receive a copy in order to transfer it to another entity or person, and you can also demand that it is transferred directly for you It could be positive and encourage controllers (hospitals, doctors) to ensure that data is in a a format that can easily be transferred could be positive and encourage controllers (hospitals, doctors) to ensure that data is in a a format that can easily be transferred
   Right to object to the processing of your data	Under the new regulation you can object to the processing of your data by a controller under these circumstances: If the processing happens for a task performed in the public interest If the processing happens for the legitimate purpose of the controller If it happens in the context of direct marketing
   Right to rectification or erasure of data	You can ask for the rectification of inaccurate personal data (e.g. in your medical record) and incomplete data completed
   Right to erasure (so-called “right to be forgotten”)	You can have your data erased. This is the so-called “right to be forgotten”. This is especially the case if: you have withdrawn consent and the data the controller has no other grounds for the processing your data if there is no longer a purpose for processing it, in accordance with the principle of limited storage and data minimization. if the processing is unlawful in the first place When the controller has made the information public, e.g. online, he has to take reasonable step to ensure other controllers also remove links etc. in order to implement your rights.

2. While the patient remains constant, the providers might change. For example, a patient moves and can no longer use the same doctor or the patient changes insurance companies requiring a change in provider of the medical provider. This implies an Access Control List (ACL) arrangement where the patient can authorize others to add new content, make updates, mark for deletion.
   

   Note: The contents of a DIDO are [[dido:public:ra:xapend:xapend.a_glossary:i:immutable|immutable]], therefore, traditional ACL permissions such as Write and Delete have no meaning. However, it is possible for older content to be replaced by newer content requiring the new content to point to the previous content. It is also possible to mark content as deleted.

   Table 2: Potential DIDO Commands for Medical Records.

   Operation	Description
   CREATE NEW	This creates a new person in the Medical DIDO. For example, a new patient is added to the Medical DIDO. The CREATE NEW command adds the new patient and returns a patient-specific couple of AsymmetricKeys (i.e., publicKey and privateKey). The public key is used to uniquely identify the patient within the medical DIDO and can be used to encrypt any information for that particular patient. The privateKey is used to decrypt the information in the Medical DIDO for that specific patient. The privateKey NEEDS TO BE KEPT PRIVATE! The ECHO command is used to place information onto the console log. Some of the fields used to describe a patient might be name, birthday, gender, marital status, address. There are other fields that are probably not required such as insurance id, group id, medicare number, etc. All of these fields are probably classified as Personal Identifiable Information (PII). The following is a proof of concept for creating a new patient in the Medical DIDO. patientKeys AsymmetricKeys = CREATE NEW { "patient" : { "name": "Lilly McSmythe", "birthdate": "11/25/1931", "gender" : "F", "maritalSatus" : "married" "address": "123 Avocado Way, San Diego, CA, USA, 92101" } }; ECHO patientKeys.publicKey; "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E"
   MANAGE ACCESS	Updates or modify the Access Control List data. The Patient Data Object (sometimes referred to as a Smart Contract) maintains its own internal Access Control List (ACL) that contains users, medical roles and access roles (i.e., READ, WRITE, etc). In this example, we add two doctrs to the list: primaryPhysician, and 'cardioVascularMd. We also grant them access roles that are traditional such as READ, UPDATE but also roles like UPLOAD and SEARCH. At this point, these roles are just conceptual in nature and need to be refined in the future. All the fields within the Patient Data Object (Smart Contract) are considered private and can only be accessed using getters and setters. The by'' field will be filled in by the infrastructure. Privilege Type Description READ Granting READ privilege allows the access to all the Read attributes or operations associated with the patient UPDATE Granting UPDATE privilege allows the access to all the writable attributes or operations associated with the patient UPLOAD Granting UPLOAD privilege allows for new content to be added to the patient record (i.e., images, lab results, vitals, etc. SEARCH Granting SEARCH privilege allows for the Read attributes or operations to be searched for particular strings. It only returns a TRUE or FALSE. All Personal Identifiable Information (PII) can be hidden from the search. DELETE Granting DELETE privilege allows for the content of the patient record to be marked as deleted OR optionally for the content to be burned by destroying the private key For example: primaryPhysician MedicalDoctor { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D55555", "name" : "Dr. Jane Lee Gupta", "phone" : "1-619-555-1212", "email" : "[email protected]" } MANAGE ADD { patient : { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D55555" "primaryPhysician" : primaryPhysician.id } } MANAGE REPLACE { patient : { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "cardioVascularMd" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2DDDDD" } } MANAGE GRANT { patient : { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "cardioVascularMd" : "READ, UPDATE, UPLOAD" } } MANAGE GRANT { patient : { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "primaryPhysician" : "SEARCH" } }
   MARK AS DELETED	Mark a person as deleted in the Medical DIDO. For Example: DELETE { "patient" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D55555" }
   UPDATE CONTENT	Update a person's information in the Medical DIDO. For example: UPDATE { "patient" : { "id" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E",, "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D5555" "maritalStatus" : "Widowed", "maritalStatusChangeDate" : "11/25/2021" } } UPDATE { "patient" : { "id" : userKeys.publicKey, "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D5555" "DateOfDeath" : "11/25/2031" } }
   UPLOAD ANCILLARY DATA	This allows for Ancillary data to be uploaded to the Patients Medical DIDO. Ancillary data is data that is associated with the patient such as vitals, images, lab result, etc. UPLOAD { "patient" : { "id" : patientKeys.publicKey, "by" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D5555" "ancillaryData" : { "image": { "type": "xray", "view": "posteroanterior", "date": "5/7/2021" }, "image": { "type": "xray", "view": "Decubitus", "date": "5/7/2021" } } } }
   ERASE	Removes the Personal Identifiable Information (PII) information from the patient in the Medical DIDO allowing the patient to be forgotten in compliance with General Data Protection Regulation (GDPR) ERASE { "patient" : patientKeys.publicKey }

3. The General Data Protection Regulation (GDPR), Data Protection Act 2018 and the California Consumer Privacy Act (CCPA) prohibit information from being “kept for no longer than is necessary”. How long should a medical record be kept by a medical provider? An insurance provider? Within the USA, its state-by-state, see: https://www.healthit.gov/sites/default/files/appa7-1.pdf

   Table 3: Example of minimum medical records retention for California and Connecticut.

   State	Medical Doctors	Hospitals
   California	California: Indefinitely, if possible. See CMA ON-CALL: The California Medical Association’s Information-On-Demand Service, available at HealthIT.gov(accessed August 14, 2008).	Adult patients 7 years following discharge of the patient. Minor patients 7 years following discharge or 1 year after the patient reaches the age of 18 (i.e., until patient turns 19) whichever is longer. Cal. Code Regs. tit. 22, § 70751(c) (2008).
   Connecticut	7 years from the last date of treatment, or, upon the death of the patient, for 3 years. Conn. Agencies Regs. § 19a-14-42 (2008).	10 years after the patient has been discharged. Conn. Agencies Regs. §§ 19-13-D3(d)(6) (2008).

   EXPIRE

   The Medical Record expires after a certain amount of time, after a certain date, or when an event occursMedical DIDO. For Example: EXPIRE { "patient" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "onDate" : "20210508" } EXPIRE { "patient" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "after" : "128 hours" } EXPIRE { "patient" : "0xDC25EF3F5B8A186998338A2ADA83795FBA2D695E", "when" : "DEATH_OF_PATIENT" }

4. A DIDO allows the use of an ACL to control what kinds of operations someone else can perform ( see MANAGE ACCESS). Although the Medical DIDO only allows for a single owner, it allows for many participants. For example, each doctor adds information to the patient's Medical DIDO (see: UPDATE CONTENT).
5. The use of an Archival Node for the long term storage of Medical DIDO patients.
6. The idea of a sidechain or specialized stream that will be joined back to the main “chain”