by: Meirav Malkin
The Israeli Ministry of Health is crafting a new law - the health data mobility law, which is aimed at allowing patients more control over their data sharing, who gets it and how. Currently, whenever a patient’s data needs to be shared between healthcare providers, often, it is the patient themselves who is forced to literally carry a hard copy from one provider to another, hence acting as messengers. In 2023, most people find this absurd – how can the whole world be technological, yet a patient must print out a form-17 (Coverage), or carry a physical disc of imaging tests and hand them over to the healthcare caregiver before receiving treatment? To get just second opinion in Israel requires a binder of papers and discs and God help you if you lose it.
The problem
Today there are many aspects of healthcare that are still not centralized in any way. Imagine the following – a patient is hospitalized in TLV Medical Center (Ichilov) for cardiological issues. They were previously hospitalized in Ziv hospital, where they underwent catheterization with a stent. As it stands, even though both hospitals are part of the government medical centers chain, the information pipeline is badly flawed: while there is a system that allows transfer of information and data, it is not coded in many places, is not easy to use, and not very interoperable. Hence, it is quite possible that someone will have to go back to Ziv hospital and retrieve at least some of the information (test results, imaging etc.) and return to Ichilov. And if it's not all accurate and in order - they might get sent home or forced to undergo unnecessary tests.
Another highly problematic scenario is encountered when a person wants to change their HMO. In Israel, there are 4 such organizations and each citizen must, by law, be a member of one. Unfortunately, there is no information pipeline that allows data to be transferred from one HMO to another if a person decides they want to make the change. This means that important information like vaccinations, allergies, surgeries etc. cannot be transferred without the patient having to collect the information, which in many cases comes with a fee. This means that either the person becomes a ”new patient” with no real history, or they must spend time and money on what should, ostensibly, be a simple act in 2023.
Finally, patients who are dependent on others, like the elderly, the handicapped or bed-ridden patients – who are more vulnerable to mistakes and “falling through the cracks”, as far as missing information – must either employ someone to do the legwork or have a family member ever-present. They. This is costly and time-consuming for all involved.
Proposed law - health data mobility law
The new proposed law, which has been formulated over the past year, is meant to allow a patient’s entire medical history, or any part of it, to be transferred from HMO to Hospital or any other medical provider and back, in a “push of a button”. This is a real revolution, as it completely removes the responsibility from the patient to be their own private medical secretaries, as well as messengers.
The law would also require any transfer of medical information to be free of charge, saving the patient not only time, but also money. This also means that if a patient finds one HMO to be cheaper than the one they are currently members of, they should be able to make the move, without the fear of losing their medical history. This allows for an increase in mobility between service providers.
One main point if the law is to give the patient greater control over who gets their information, how much of it can they access, and under what circumstances. Patient consent to having their information shared is stipulated as an integral and important part of the process, as well as steps towards information security. The proposition states that high security standards must be used to protect all data, allowing for the confidentiality of medical information, privacy protection, and cyber security, as well as preventing the possibility of unauthorized third parties using the data.
Main points
According to the memorandum put forth for public comments it is proposed to establish provisions in these matters:
- standardization and the quality of information: transitioning from internal and outdated to internationally accepted code systems and catalogues. This will standardize codes, concepts, medications, treatments and much more, enhancing interoperability. To standardize the quality and integrity of information, the law recommends all information be transferred via FHIR® infrastructure.
- determining health information buckets: To make efficient and proportional use of the interface, it is required to group the various information details into information baskets as well as to standardize the information shared and the historical depth – i.e., how far back must the information go to be considered whole. The buckets should be compliant with the IL-Core FHIR® profiles.
- Obligation to transfer information to the recipient of information: Any person will have the ability to grant transfer authorization on their data from an information source to an information recipient. This will be done with defined information baskets and in accordance with the information recipient’s request.
- license to receive information: Information recipients will be regulated, as the information shared is sensitive and could amount to very large amounts of data on a person’s health.
- the purposes of using the information: Is the information to be used for medical purposes, for the guarantee of the patient’s rights; or others, such as research or statistical analysis.
- the register of services: In order to operate the services and receive information for their operation, the recipient of the information must submit to the commissioner the terms of service regarding each of the services that appear in their license, and they will be able to operate them only after the terms of service are published by the commissioner in a public registry.
- Instructions applicable to recipients of information and sources of information and access to information for patients and enforcement: Regulation of the activity of the recipients of the information and their obligations. Among these, the topics that the recipient of the information must present to the patient before receiving his consent to share information, the consideration that the recipient of the information may receive regarding the services for which the information was requested; The obligation of confidentiality applies to the recipient of the information, and other issues.
- Making information accessible to patients: enabling patients themselves to get a complete picture of the health information available from all sources of information. All the information will be displayed in the patient's personal area on the HMO website.
- Enforcement: Establishing penal clauses and commissioner powers to impose sanctions on the sources, and recipients, of the information in cases where the law is violated.
The new law and FHIR®
The law memorandum stipulates FHIR®, and the IL-Core profiles (profiles on the base FHIR resources, crafted to suit the needs of the Israeli healthcare ecosystem) as the backbone for its implementation. The law is all about making medical data more accessible and easier to share and creating an easy possibility to transfer said data. The backbone of implementation is interoperability – the ability of data systems to “talk” to one another.
FHIR (Fast Healthcare Interoperability Resources) is a modern, flexible, and open standard for exchanging healthcare information between different systems. It is designed for use by multiple healthcare stakeholders, including healthcare providers, payers, and patients, and is ideal for implementing legislation that allows easy sharing of patients’ data, which would improve patient outcomes, remove patients’ responsibility of data delivery, allow for better control over who gets the data, and even simplify transfers from one HMO to another.
FHIR enables the secure and standardized exchange of health data between systems using REST APIs that provide a common format for data exchange. In addition, FHIR provides strong privacy and security features, including built-in data flow control and audit trails, to ensure patient data is protected during sharing. This makes it an ideal solution for complying with legislation that requires the secure transfer of sensitive patient information between healthcare organizations.
Overall, FHIR's combination of standardization, interoperability, security, and flexibility make it an ideal framework to implement the law-compliant data infrastructure, which easy transfer of medical data between all players in a manner compliant with the law, while giving patients full control over their data.
These days there is a constantly growing number of FHIR based projects, with all four HMOs taking steps in the direction of incorporating FHIR into all facets of data operation. In addition, there have been several government-led incentive-based programs to encourage HMOs and hospitals to adopt FHIR into their organizations, for the creation of better interoperability. The Ministry of Health has also been making its own strides, as a FHIR-based community genetic survey is being launched. Ongoing projects in Israel span a whole plethora of subjects, including, but not limited to: Operational hubs, wound assessment, coverage pre-assessments, distributed machine-learning research, home hospitalizations, digital prescriptions and more.
We at Outburn are thrilled to see this legislation come into action. We believe this is an important step towards better healthcare, better outcomes, and a better all-around experience for patients in the Israeli healthcare ecosystem.
Important links:
The new law proposal memorandum
A piece in Hebrew about the new law in N12 website
From our blog - FHIR in Israel
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