Digital data exchange in maternity care and the role of VIPP Babyconnect
About VIPP Babyconnect
VIPP Babyconnect realizes user-friendly, safe, digital data exchange in cooperation with the birth care. The goal: the right information, at the right time, to the client and to the right care provider.
This approach to digital data exchange is needed for seamless care for mother and child(ren) during pregnancy and birth, including transfer to other care providers for the client and her child, including youth health care and paediatricians. Better data exchange should deliver better care to help reduce infant mortality and other negative outcomes.
- Babyconnect is a national acceleration programme for the exchange of information between patients and professionals (VIPP) in birth care and was established on the initiative of the birth care sector and the Ministry of Health, Welfare and Sport.
- The budget amounts to € 15 million and consists of a subsidy from the Ministry of Health, Welfare and Sport for the activities of the national programme office and implementations by 15 to 20 regional partnerships involving a total of 72 obstetric associations (VSVs).
- The duration is from April 2019 to 31 December 2022 for support by the programme office, and until 1 July 2023 for the regional implementations.
- VIPP Babyconnect is an activity of ANBI foundation CareCodex. The program was commissioned by the Ministry of Health, Welfare and Sport by a steering committee, formed by RSO Netherlands, Perinatal Care Board, Nictiz, Perined and CareCodex Foundation.
- The following parties are involved in the realisation of VIPP Babyconnect by CareCodex Foundation: Ministry of Health, Welfare and Sport, MedMij, Registration at the Source, College Perinatal Care (CPZ), Perined, Nictiz, Federation of VSVs, RSO Nederland, VZVZ, Twiin, GGD GHOR Nederland, NVOG, Bo geboortezorg, ActiZ, NVZ, NVK, NFU, Zn, Patient Federation Netherlands, NCJ and KNOV.
- End users of healthcare information have an important place within VIPP Babyconnect. In order of hierarchy, these are: 1. clients, 2. care providers, 3. care organizations, and 4. data analysts. In four national end user groups, together with the development team of VIPP Babyconnect, they think about how safe and user-friendly data exchange should work for them in practice. The members participate in a personal capacity. Regional partnerships also involve end users and choose their own approach for this.
- The intended outcomes include an adjusted method of data exchange and roles and responsibilities of organisations in the birth care sector in that adjusted method.
- These outcomes will be secured after the completion of VIPP Babyconnect through an Innovation and Management cycle that will be established during the programme in cooperation with the organisations involved.
Birth care is networked care
In birth care, continuity of care for the client is determined not only by planned one-to-one transfers between care providers (chain care), but also by parallel and unplanned care relationships, including in the case of emergencies. This places demands on the secure exchange of data between care providers and with the client.
- The healthcare providers involved include obstetricians, gynaecologists, maternity nurses, JGZ doctors and JGZ nurses, and depending on the care need, paediatricians and other medical specialists. For the pregnant woman or maternity ward, the involvement of this network of care providers must lead to the support that she and her child need.
- The ability to share and access relevant data within the various care relationships contributes to better and more coherent care for the client, and gives the client the possibility of control.
Adverse effects of the current situation
The way in which data is currently exchanged within the birth care sector is out of date. Paradoxically, the complex structure of the sector is both a necessity and a challenge to organise data exchange differently.
These are the adverse effects of the current data exchange:
- The client has to tell the same story several times because care providers cannot access her data from other care providers.
- The client has no control over her data. That is, she cannot decide who can see which data and she cannot see who has seen which data.
- The healthcare provider cannot access data from the source, i.e. where it was originally recorded. Instead, data from other healthcare providers must be copied from a call, print, fax, digital copy or secure e-mail. This creates extra work and increases the risk of errors.
- Data is not shared or received digitally.
- Data is missing.
- The method of registration and the indicators used by the different types of healthcare providers do not sufficiently match each other.
- Data is transferred more slowly than the client, causing the next practitioner to miss data.
Framework for digital data exchange
The requirements to be met by secure digital data exchange in birth care were laid down in 2018 by organisations in the birth care sector and the Ministry of Health, Welfare and Sport in the 'Framework for realisation of digital information sharing in birth care in the Netherlands'. There is broad support for these agreements.
- The framework was commissioned and directed by the Ministry of Health, Welfare and Sport, Directorate of Curative Care, in cooperation with CPZ, Perined and Nictiz, and was drawn up by CareCodex Foundation.
It forms the starting point of VIPP Babyconnect.
- According to the framework, data exchange must meet the following requirements:
- The client is in control of her data.
- The client must be able to view her own data. Her Personal Health Environment (PGO) must therefore be able to receive her data, including the registration of adding and consulting data, the so-called logging.
- Healthcare providers should be able to continue working in their own system and view all relevant data in one screen; the so-called 'dynamic consultation' of relevant data, for example an integral pregnancy map.
- Healthcare providers must be able to consult the most up-to-date data.
- Caregivers should not have to go through multiple documents to find relevant information.
- The organisation providing the care must be able to monitor the quality of the care process it carries out in order to improve it where necessary.
- The RIVM and Perined, which are responsible for macro data on birth care, should be able to monitor the quality of birth care in the Netherlands and make the results (indicators) available to improve the quality of the care process.
- The data exchange must comply with all laws and regulations, for example, in the areas of privacy protection and data security.
- The data exchange must comply with national and international standards.
- The data exchange must meet the functional requirements of the four categories of end-users of this data, namely clients/patients, healthcare providers, healthcare organisations and data analysts.
Finally: responsibilities, cooperation and technology
In order to meet the requirements formulated by the sector and the government in the framework, very concrete agreements are needed about responsibilities, cooperation, standards and techniques.
These are the main principles and agreements for it:
- The client has control over who can see which data and she can see who has posted and/or accessed which data and when, according to provisions in the AVG, WGBO and Wabvpz.
- An independent party controls access to client data. This party is not a company, the government or a healthcare insurer, but the healthcare itself in an organisational form that has yet to be determined.
- Healthcare providers and clients must be able to access relevant data, i.e. the right data must be available at the right time based on the Medical Authorisation Protocol.
- This data exchange requires interoperability of the various healthcare information systems, based on agreements on content, technology and process.
- VIPP Babyconnect attunes this with all relevant parties. These include Twiin (image availability and data availability), HL7, MITZ (open source software for exchange of medical data), IHE (standardisation and harmonisation of information exchange) and MedMij (system of agreements for safe exchange of health data via a PGO).
- The healthcare provider has final responsibility for the sharing and use of data. The healthcare information system (a so-called XIS, where X can stand for Obstetrics, Hospital or Maternity Information System) of the healthcare provider for birth care must meet the Zorgstandaard Integrale Geboortezorg (ZIG) (Care Standard for Integrated Birth Care) and the Informatiestandaard Geboortezorg (Information Standard for Birth Care).
- The output of an XIS must comply with the information standard as laid down in the VIPP Babyconnect Agreements System. This system includes the PWD (Perinatal Dictionary and Dataset), ZIB (healthcare information building blocks), FHIR (standard for digital data exchange), SNOMED (standard for coding of medical data). The available output of an XIS may be converted to comply with these standards if necessary.
- The healthcare provider is responsible for the quality of the data. When publishing, the healthcare provider is responsible for entering the correct data about the client and the treatment. A subsequent healthcare provider who treats the client is responsible for consulting the latest (most current) data, which moreover must be relevant to the treatment relationship.
- A healthcare provider continues to work in its own healthcare information system. The healthcare provider does not need to enter any data of the client that is already available in the healthcare information system of another healthcare provider for the client. The healthcare provider does not have to log in again or identify itself again to see this data if it has already logged in and identified itself within its own healthcare information system (the single-sign-on principle SSO).
- Secure data exchange is based, among other things, on authentication of healthcare provider, healthcare supplier and healthcare information system. The responsibility for authentication will be entrusted to an authority to be determined.
- Data are recorded once at the source (where the care takes place) for multiple use (if the care for the client is followed by other care providers).
- Data is recorded according to the principle of Unity of Language, as laid down in Dutch standards (CIM, ZIB, PWD) and some international standards (HL7-FHIR, SNOMEDCT/LOINC).
- Interoperability within birth care is achieved without making a customer dependent on a supplier for products and services, as the customer is unable to change supplier without substantial switching costs or inconvenience (so-called vendor lock-in).
- The birth care sector is joining forces at the national level in supplier management and infrastructure agreements (in collaboration with Twiin, the RSOs and RSO Nederland). This must result in a secure network in which each link complies with established requirements for data security and data privacy. The security of each link is necessary for the security of the network as a whole.
- Working methods and standards that apply to each region are developed and managed nationally, and implemented regionally.
- Data exchange in maternity care must meet the requirements set out in the VIPP Babyconnect subsidy scheme, and contributes to achieving the following outcome targets of Informatieberaad Zorg: medication safety, patient centricity, standardised data exchange, and recording and reuse of data once. The end user groups, among others, ensure that these goals are achieved.
- The agreements and techniques for safe data exchange are sustainable, i.e. the method is financially, substantively and organisationally tenable for birth care after the completion of the VIPP Babyconnect programme. By using digital functionality that was not previously available, the ICT costs in maternity care are expected to be structurally higher. This, too, requires an affordable assurance.
- The safeguarding of working methods, roles and responsibilities takes place within the Innovation and Management cycle Data exchange in Birth Care, which is being established during the VIPP Babyconnect programme.
On this page you will find an overview of the trainings Babyconnect provides.
More information about Babyconnect is available at www.babyconnect.org
Thinking always goes on
At VIPP Babyconnect we believe that it takes many perspectives to start seeing what works for everyone. That is why this document was created with the knowledge and insights of clients professionals, experts, policy makers and administrators. Do you see opportunities for improvement? Let us know Let us know via email@example.com. Because together we know more and together we will get further.