Committee Data Inventory
Chair: Martijn Bours
Members: Dounya Schoormans & Femke Jansen
The objective of the Data inventory Committee is to improve collaboration and data sharing among researchers in psychosocial oncology. For that purpose, the committee aims to:
1) Raise awareness about data sharing, amongst others by presenting showcases on potential benefits of data sharing
2) Provide insight into available data from psychosocial oncology research teams/projects in the Netherlands via an easily accessible and searchable data inventory.
Sharing data creates value
At POCON, we believe that research data reaches its full potential only when it can be shared. A well-structured and accessible data inventory enables knowledge reuse, accelerates innovation, and maximises the impact of research.
Data sharing is not a one-way street — it is a win-win-win.
Why share data?
For patients
By sharing data, patient experiences continue to inform better care, decision-making, and quality of life improvements — long after their participation in a study has ended.
For researchers who generated the data
Making data available increases the visibility, reuse, and scientific impact of research. It fosters new collaborations, leads to additional citations, and ensures that research outcomes are fully utilised.
For researchers reusing data
Access to high-quality existing datasets enables faster, more efficient research, prevents unnecessary duplication, and supports new research questions in a responsible and innovative way.
Success story: the PROFILES Registry
A strong example of the power of data sharing is the PROFILES Registry (Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship).
Established in 2004, the PROFILES Registry has been collecting patient-reported outcomes from cancer survivors and a normative population for nearly two decades. A recent review by Mols et al. (2024) highlights almost 20 years of impact, resulting in 249 publications across 35 studies.
The review demonstrates:
- The value of longitudinal patient-reported outcome data
- The strength of combining PRO data with clinical registries
- How open access publishing and data sharing amplify scientific and societal impact
Through its strong data infrastructure and open approach, the PROFILES Registry directly contributes to improved survivorship care, policy, and quality of life for cancer survivors.
POCON’s role
POCON facilitates responsible, secure, and accessible data sharing. Through a clear and transparent data inventory, we connect datasets and researchers, enabling collaboration and reuse.
Together, we work towards:
- Greater transparency
- Increased reuse of valuable data
- Greater research impact
Join us
Do you have research data that could be valuable to others?
Or are you looking for existing data for new research?
👉 Join the POCON data inventory and increase the impact of your research. Click here.
The data inventory of research projects contains details on:
- Study design (e.g., longitudinal, intervention, etc.)
- Population (e.g., cancer type and whether a healthy norm population is involved, gender, age)
- Measurement types (e.g., questionnaires, biomarkers, psychological tasks, interventions)
- Metadata
Please note that this is not a repository for storing or accessing data. Instead, it will help researchers discover what data are available and who to contact, in order to stimulate collaboration.
By providing access for researchers to freely explore available data and samples, the committee strives to contribute to enhanced data sharing and stronger collaborations within the field of psychosocial oncology.
Do you have questions or want to contribute to this committee? If so, please contact Martijn Bours.