Responsible data use

Farminform stands for responsible and careful use of data

Farminform provides for the exchange of high-quality market and user information regarding the Dutch pharmaceutical market. Patients and healthcare stakeholders benefit from the responsible and safe exchange of data between healthcare providers, governments and industry. Convinced of the importance of data protection, Farminform as data trust takes all necessary measures in line with the law, including the General Data Protection Regulation (Algemene Verordening Gegevensbescherming (AVG)), to guarantee lawful and ethical data processing. The processing of (personal) data therefore takes place only:
 

• in a lawful and transparent manner;
• for precisely defined and legitimate purposes;
• in an adequate, relevant and necessary manner for the defined purposes.

 
All (initiatives for) data processing are tested against legal requirements by independent experts, including the Data Protection Officer (Functionaris Gegevensbescherming (FG)). This ensures confidential and lawful data processing. As a reliable partner, Farminform guarantees a careful and transparent process, also based on best practices regarding data processing. As a data trust, Farminform has taken far-reaching measures to ensure data security and protection. This is done using state-of-the-art technology. In doing so, guidelines on availability, integrity and confidentiality are meticulously observed.
 

Appointment of Data Protection Officer

As a data processor, Farminform is responsible for compliance with the principles of the AVG with regard to the processing of personal data. Appropriate measures are taken to ensure the best possible compliance. For example, Farminform has, voluntarily chosen to appoint a Data Protection Officer (Functionaris Gegevensbescherming (FG)).

The appointment of an FG as an external independent supervisor is required by law in some cases. Given the nature of the current processing operations within Farminform, this obligation does not apply (yet).  Nevertheless, Farminform considers it an added value to be verifiable and open to critical scrutiny. Within Farminform, the FG monitors the application of and compliance with the AVG principles, advises on this and is the contact point for the Personal Data Authority and all stakeholders. The FG always tests whether Farminform is still meeting its legal obligations in practice. In this context, the FG also closely monitors new developments in the field of data protection and issues advice on data protection risks. Farminform also seeks the FG's advice on complex, legal data protection issues or agreements.
 

Ethical reflection on data use

Farminform processes data in accordance with privacy legislation and goes one step further to monitor integrity and responsible data use. Data ethics, the application of ethical principles when processing data, therefore occupies an important place within the organisation. After all, the use of data also invites ethical reflection. In doing so, Farminform not only looks at what is possible by law and technology, but also consciously considers what is desirable and responsible. After all, every data processing issue is unique and requires a careful approach. Based on the context, a legal and ethical consideration is always made, with Farminform continuously taking into account the purposes, necessity and desirability of the processing. The focus is not only on efficiency, but there is also room for reflection and consultation. Guiding principles used in this process are particularly focused on transparency, fairness, accountability and avoiding bias.

Farminform Review Committee

Farminform has set up a review committee because it is increasingly carrying out projects for and together with hospitals and healthcare institutions.

Farminform considers it important to operate completely transparently. Not only because the organisations we work with are entitled to do so or because public opinion demands it, but mainly because Farminform believes that clear and transparent operations should be the standard.

We would like to introduce the members of the review committee to you:

Ms mr. Lela Saou, chairman, Data Protection Officer (photo left)
Lela is the Data Protection Officer (FG) for Farminform and independently oversees compliance with the AVG and data protection policies. Lela has a background in (international) health law, focusing on privacy. She also has extensive experience as an FG at both large and small organisations in a variety of industries within the healthcare sector. Lela is a member of the Dutch Society of Data Protection Officers and the Health Law Association.

Ms Dr Anne-Marie van Walraven, member, compliance (pictured centered)
Anne-Marie has worked in healthcare since 1977, initially as a nurse, later in various coordinating roles, and as a scientific researcher.She is also involved in (inter)national projects as a project leader and policy officer.
From 2020, Anne-Marie is working as Privacy Coordinator in the healthcare sector and she is employed on a freelance basis as a certified Systemic Team Coach.In the field of AVG, Anne-Marie offers advice and support to teams to become AVG compliant.

Ms Warnyta Minnaard, member, patientperspective (picture right)
Warnyta is one of the founders of Missie Tumor Onbekend, the Dutch patient and advocacy organization for patients with metastatic cancer of unknown primary origin (PTO, or also CUP/Cancer of Unknown Primary). Within her patient advocacy activities, Warnyta is also co-founder of the international PTO patient organization, worldcupawareness.org; and board member at CUPP NL, the national medical platform for healthcare professionals and researchers in the field of PTO. She is also a patient representative at the Data Access Board at Hartwig Medical Foundation, and a speaker at various (inter)national medical conferences. In addition to her advocacy roles, Warnyta also has two professional roles as a part-time project lead at the Nederlands Kanker Collectief and as a part-time investment manager at the Donor Impact Invest Fund.