Operationalizing and digitizing person-centered daily functioning: a case for functionomics

BMC Medical Informatics and Decision Making, vol. 24, pp. 184

Abstract

An ever-increasing amount of data on a person's daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the full potential of data on daily functioning cannot yet be exploited as it is mostly stored in an unstructured and inaccessible manner. The integration of these data, and thereby expedited knowledge discovery, is possible by the introduction of functionomics as a complementary 'omics' initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person's daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).A prerequisite for making functionomics operational are the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. This paper illustrates a step by step application of the FAIR principles for making functionomics data machine readable and accessible, under strictly certified conditions, in a practical example. Establishing more FAIR functionomics data repositories, analyzed using a federated data infrastructure, enables new knowledge generation to improve health and person-centered healthcare. Together, as one allied health and healthcare research community, we need to consider to take up the here proposed methods.

Authors 10

1. Esther Janssen corresponding

   HAN University of Applied Sciences · Radboud University Nijmegen · Radboud University Medical Center · VieCuri Medisch Centrum · Radboud Institute for Health Sciences

   Affiliation as printed

   Department of Orthopedic Surgery, VieCuri Medical Centre, Tegelseweg 210, Venlo, 5912 BL, The Netherlands. estherjanssen@viecuri.nl

   Radboud Institute for Health Sciences, IQ health, Radboud university medical centre, Nijmegen, The Netherlands. estherjanssen@viecuri.nl

   School of Allied Health, HAN University of Applied Sciences, Nijmegen, The Netherlands. estherjanssen@viecuri.nl

   Radboud Institute for Health Sciences, IQ health, Radboud university medical centre, Nijmegen, The Netherlands

2. Ilona M. Punt

   Maastricht University Medical Centre · Maastricht University

   Affiliation as printed

   Department of Orthopedics and Research School Caphri, Maastricht University Medical Centre+, Maastricht, The Netherlands

3. Johan van Soest

   Maastricht University Medical Centre · Maastricht University

   Affiliation as printed

   Brightlands Institute for Smart Society (BISS), Faculty of Science and Engineering (FSE), Maastricht University, Heerlen, The Netherlands

   Department of Radiation Oncology (Maastro), GROW-School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands

4. Yvonne F. Heerkens

   HAN University of Applied Sciences

   Affiliation as printed

   Dutch Institute of Allied Health Care (NPi), Amersfoort, The Netherlands

   Research Group Occupation & Health, HAN University of Applied Sciences, Nijmegen, The Netherlands

5. Hillegonda A. Stallinga

   University Medical Center Groningen · University of Groningen

   Affiliation as printed

   University of Groningen, University Medical Center Groningen, Groningen, The Netherlands

6. Lodewijk W. van Rhijn

   Utrecht University

   Affiliation as printed

   Department of Orthopedic surgery, Utrecht University, Utrecht, The Netherlands

7. Barend Mons Aachen

   Leiden University · Leiden University Medical Center · GO FAIR Foundation

   Affiliation as printed

   GO FAIR International Support & Coordination Office (GFISCO), Leiden, The Netherlands

   Leiden University Medical Centre, Leiden, The Netherlands

8. Andre L.A.J. Dekker

   Maastricht University Medical Centre

   Affiliation as printed

   Department of Radiation Oncology (Maastro), GROW-School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands

9. Paul C. P. H. Willems

   Maastricht University Medical Centre · Maastricht University

   Affiliation as printed

   Department of Orthopedics and Research School Caphri, Maastricht University Medical Centre+, Maastricht, The Netherlands

10. Nico L. U. van Meeteren

    Erasmus MC · Health Holland

    Affiliation as printed

    Department of Anesthesiology, Erasmus Medical Centre, Rotterdam, The Netherlands

    Top Sector Life Sciences and Health (Health~Holland), The Hague, The Netherlands