{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,24]],"date-time":"2026-03-24T03:26:30Z","timestamp":1774322790888,"version":"3.50.1"},"reference-count":42,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T00:00:00Z","timestamp":1719446400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T00:00:00Z","timestamp":1719446400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"abstract":"<jats:title>Abstract<\/jats:title><jats:p>An ever-increasing amount of data on a person\u2019s 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 \u2018omics\u2019 initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person\u2019s daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).<\/jats:p><jats:p>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.<\/jats:p>","DOI":"10.1186\/s12911-024-02584-2","type":"journal-article","created":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T16:33:17Z","timestamp":1719505997000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Operationalizing and digitizing person-centered daily functioning: a case for functionomics"],"prefix":"10.1186","volume":"24","author":[{"given":"Esther R.C.","family":"Janssen","sequence":"first","affiliation":[]},{"given":"Ilona M.","family":"Punt","sequence":"additional","affiliation":[]},{"given":"Johan","family":"van Soest","sequence":"additional","affiliation":[]},{"given":"Yvonne F.","family":"Heerkens","sequence":"additional","affiliation":[]},{"given":"Hillegonda A.","family":"Stallinga","sequence":"additional","affiliation":[]},{"given":"Huib","family":"ten Napel","sequence":"additional","affiliation":[]},{"given":"Lodewijk W.","family":"van Rhijn","sequence":"additional","affiliation":[]},{"given":"Barend","family":"Mons","sequence":"additional","affiliation":[]},{"given":"Andre","family":"Dekker","sequence":"additional","affiliation":[]},{"given":"Paul C.","family":"Willems","sequence":"additional","affiliation":[]},{"given":"Nico L.U.","family":"van Meeteren","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2024,6,27]]},"reference":[{"issue":"4","key":"2584_CR1","doi-asserted-by":"publisher","first-page":"286","DOI":"10.1007\/s11547-017-0838-3","volume":"123","author":"D Cusumano","year":"2018","unstructured":"Cusumano D, Dinapoli N, Boldrini L, Chiloiro G, Gatta R, Masciocchi C, et al. Fractal-based radiomic approach to predict complete pathological response after chemo-radiotherapy in rectal cancer. Radiol Med. 2018;123(4):286\u201395.","journal-title":"Radiol Med"},{"issue":"12","key":"2584_CR2","doi-asserted-by":"publisher","first-page":"749","DOI":"10.1038\/nrclinonc.2017.141","volume":"14","author":"P Lambin","year":"2017","unstructured":"Lambin P, Leijenaar RTH, Deist TM, Peerlings J, de Jong EEC, van Timmeren J, et al. Radiomics: the bridge between medical imaging and personalized medicine. Nat Reviews Clin Oncol. 2017;14(12):749\u201362.","journal-title":"Nat Reviews Clin Oncol"},{"issue":"8","key":"2584_CR3","doi-asserted-by":"publisher","first-page":"392","DOI":"10.1016\/j.trecan.2016.06.008","volume":"2","author":"K Rhrissorrakrai","year":"2016","unstructured":"Rhrissorrakrai K, Koyama T, Parida L. Watson for genomics: moving personalized medicine forward. Trends Cancer. 2016;2(8):392\u20135.","journal-title":"Trends Cancer"},{"issue":"7","key":"2584_CR4","doi-asserted-by":"publisher","first-page":"719","DOI":"10.1586\/14737159.2016.1164601","volume":"16","author":"R Ibrahim","year":"2016","unstructured":"Ibrahim R, Pasic M, Yousef GM. Omics for personalized medicine: defining the current we swim in. Expert Rev Mol Diagn. 2016;16(7):719\u201322.","journal-title":"Expert Rev Mol Diagn"},{"key":"2584_CR5","doi-asserted-by":"crossref","unstructured":"Micheel CM, Nass SJ, Omenn GS, editors. Evolution of translational omics: lessons learned and the path forward. Washington (DC): National Academies Press (US); 2012.","DOI":"10.17226\/13297"},{"key":"2584_CR6","first-page":"1","volume-title":"Periparturient diseases of dairy cows: a systems biology approach","author":"M Vailati-Riboni","year":"2017","unstructured":"Vailati-Riboni M, Palombo V, Loor JJ. What are omics sciences? In: Ametaj BN, editor. Periparturient diseases of dairy cows: a systems biology approach. Cham: Springer International Publishing; 2017. p. 1\u20137."},{"key":"2584_CR7","unstructured":"Research N, Transcriptomics. Nature Research;\u00a0https:\/\/www.nature.com\/subjects\/transcriptomics."},{"issue":"2","key":"2584_CR8","doi-asserted-by":"publisher","first-page":"563","DOI":"10.1148\/radiol.2015151169","volume":"278","author":"RJ Gillies","year":"2016","unstructured":"Gillies RJ, Kinahan PE, Hricak H. Radiomics: images are more than pictures, they are data. Radiology. 2016;278(2):563\u201377.","journal-title":"Radiology"},{"issue":"5","key":"2584_CR9","doi-asserted-by":"publisher","first-page":"603","DOI":"10.1080\/09638288.2016.1277404","volume":"40","author":"YF Heerkens","year":"2017","unstructured":"Heerkens YF, de Weerd M, Huber M, de Brouwer CPM, van der Veen S, Perenboom RJM, et al. Reconsideration of the scheme of the international classification of functioning, disability and health: incentives from the Netherlands for a global debate. Disabil Rehabil. 2017;40(5):603\u201311.","journal-title":"Disabil Rehabil"},{"issue":"1\u20132","key":"2584_CR10","doi-asserted-by":"publisher","first-page":"96","DOI":"10.1162\/dint_a_00032","volume":"2","author":"O Beyan","year":"2020","unstructured":"Beyan O, Choudhury A, Soest Jv, Kohlbacher O, Zimmermann L, Stenzhorn H, et al. Distributed analytics on sensitive medical data: the personal health train. Data Intell. 2020;2(1\u20132):96\u2013107.","journal-title":"Data Intell"},{"issue":"1","key":"2584_CR11","doi-asserted-by":"publisher","first-page":"180118","DOI":"10.1038\/sdata.2018.118","volume":"5","author":"MD Wilkinson","year":"2018","unstructured":"Wilkinson MD, Sansone S-A, Schultes E, Doorn P, Bonino da Silva Santos LO, Dumontier M. A design framework and exemplar metrics for FAIRness. Sci Data. 2018;5(1):180118.","journal-title":"Sci Data"},{"issue":"10","key":"2584_CR12","doi-asserted-by":"publisher","first-page":"733","DOI":"10.1097\/01.phm.0000179521.70639.83","volume":"84","author":"G Stucki","year":"2005","unstructured":"Stucki G. International Classification of Functioning, disability, and health (ICF): a promising framework and classification for rehabilitation medicine. Am J Phys Med Rehabil. 2005;84(10):733\u201340.","journal-title":"Am J Phys Med Rehabil"},{"key":"2584_CR13","doi-asserted-by":"publisher","unstructured":"Kostanjsek N. Use of The International Classification of Functioning, Disability and Health (ICF) as a conceptual framework and common language for disability statistics and health information systems.\u00a0BMC Public Health. 2011;11 Suppl 4(Suppl 4):S3. https:\/\/doi.org\/10.1186\/1471-2458-11-S4-S3.","DOI":"10.1186\/1471-2458-11-S4-S3"},{"issue":"7","key":"2584_CR14","doi-asserted-by":"publisher","first-page":"1163","DOI":"10.1377\/hlthaff.2014.0053","volume":"33","author":"HM Krumholz","year":"2014","unstructured":"Krumholz HM. Big data and new knowledge in medicine: the thinking, training, and tools needed for a learning health system. Health Aff (Millwood). 2014;33(7):1163\u201370.","journal-title":"Health Aff (Millwood)"},{"issue":"9","key":"2584_CR15","doi-asserted-by":"publisher","first-page":"876","DOI":"10.1136\/thoraxjnl-2013-204949","volume":"69","author":"M Vrijheid","year":"2014","unstructured":"Vrijheid M. The exposome: a new paradigm to study the impact of environment on health. Thorax. 2014;69(9):876\u20138.","journal-title":"Thorax"},{"key":"2584_CR16","unstructured":"(KNGF) KNGvF. FysioFacts. https:\/\/www.kngf.nl\/KNGF\/Missie+%26+Visie\/feiten--cijfers.html; 2019."},{"key":"2584_CR17","unstructured":"Eurostat. Healthcare personnel statistics - dentists, pharmacists and physiotherapists https:\/\/ec.europa.eu\/eurostat\/statistics-explained\/index.php\/Healthcare_personnel_statistics_-_dentists,_pharmacists_and_physiotherapists2020."},{"key":"2584_CR18","unstructured":"Elflein J, Number of physical therapists in the U.S. 2001\u20132016 https:\/\/www.statista.com\/statistics\/185731\/number-of-physical-therapists-in-the-us-since-2001\/#:~:text=Number%20of%20physical%20therapists%20in%20the%20U.S.%202001%2D2016&text=In%202001%2C%20there%20were%20126%2C450,were%20216%2C920%20physical%20therapists%20employed.2016"},{"issue":"1069","key":"2584_CR19","doi-asserted-by":"publisher","first-page":"20160689","DOI":"10.1259\/bjr.20160689","volume":"90","author":"T Lustberg","year":"2017","unstructured":"Lustberg T, van Soest J, Jochems A, Deist T, van Wijk Y, Walsh S, et al. Big data in radiation therapy: challenges and opportunities. Br J Radiol. 2017;90(1069):20160689.","journal-title":"Br J Radiol"},{"key":"2584_CR20","doi-asserted-by":"publisher","first-page":"131","DOI":"10.1016\/j.addr.2016.01.006","volume":"109","author":"P Lambin","year":"2017","unstructured":"Lambin P, Zindler J, Vanneste BGL, De Voorde LV, Eekers D, Compter I, et al. Decision support systems for personalized and participative radiation oncology. Adv Drug Deliv Rev. 2017;109:131\u201353.","journal-title":"Adv Drug Deliv Rev"},{"issue":"7","key":"2584_CR21","doi-asserted-by":"publisher","first-page":"1123","DOI":"10.1377\/hlthaff.2014.0041","volume":"33","author":"DW Bates","year":"2014","unstructured":"Bates DW, Saria S, Ohno-Machado L, Shah A, Escobar G. Big data in health care: using analytics to identify and manage high-risk and high-cost patients. Health Aff. 2014;33(7):1123\u201331.","journal-title":"Health Aff"},{"issue":"3","key":"2584_CR22","doi-asserted-by":"publisher","first-page":"303","DOI":"10.1016\/j.radonc.2014.10.001","volume":"113","author":"T Skripcak","year":"2014","unstructured":"Skripcak T, Belka C, Bosch W, Brink C, Brunner T, Budach V, et al. Creating a data exchange strategy for radiotherapy research: towards federated databases and anonymised public datasets. Radiother Oncol. 2014;113(3):303\u20139.","journal-title":"Radiother Oncol"},{"issue":"1","key":"2584_CR23","doi-asserted-by":"publisher","first-page":"160018","DOI":"10.1038\/sdata.2016.18","volume":"3","author":"MD Wilkinson","year":"2016","unstructured":"Wilkinson MD, Dumontier M, Aalbersberg IJ, Appleton G, Axton M, Baak A, et al. The FAIR Guiding principles for scientific data management and stewardship. Sci Data. 2016;3(1):160018.","journal-title":"Sci Data"},{"key":"2584_CR24","first-page":"232","volume":"2018","author":"DC Berrios","year":"2018","unstructured":"Berrios DC, Beheshti A, Costes SV. FAIRness and usability for open-access omics data systems. AMIA Annu Symp Proc. 2018;2018:232\u201341.","journal-title":"AMIA Annu Symp Proc."},{"key":"2584_CR25","doi-asserted-by":"publisher","first-page":"49","DOI":"10.3233\/ISU-170824","volume":"37","author":"B Mons","year":"2017","unstructured":"Mons B, Neylon C, Velterop J, Dumontier M, da Silva Santos LOB, Wilkinson MD. Cloudy, increasingly FAIR; revisiting the FAIR data guiding principles for the European open Science cloud. Inform Serv Use. 2017;37:49\u201356.","journal-title":"Inform Serv Use."},{"issue":"10","key":"2584_CR26","doi-asserted-by":"publisher","first-page":"e854","DOI":"10.1002\/mp.12879","volume":"45","author":"A Traverso","year":"2018","unstructured":"Traverso A, van Soest J, Wee L, Dekker A. The radiation oncology ontology (ROO): publishing linked data in radiation oncology using semantic web and ontology techniques. Med Phys. 2018;45(10):e854\u201362.","journal-title":"Med Phys"},{"issue":"7","key":"2584_CR27","doi-asserted-by":"publisher","first-page":"1324","DOI":"10.1016\/j.apmr.2021.02.013","volume":"102","author":"ER Janssen","year":"2021","unstructured":"Janssen ER, Osong B, van Soest J, Dekker A, van Meeteren NL, Willems PC, Punt IM. Exploring Associations of Preoperative Physical Performance With Postoperative Outcomes After Lumbar Spinal Fusion: A Machine Learning Approach. Arch Phys Med Rehabil. 2021;102(7):1324\u20131330.e3. https:\/\/doi.org\/10.1016\/j.apmr.2021.02.013.","journal-title":"Arch Phys Med Rehabil."},{"issue":"2","key":"2584_CR28","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1006\/knac.1993.1008","volume":"5","author":"TR Gruber","year":"1993","unstructured":"Gruber TR. A translation approach to portable ontology specifications. Knowl Acquisition. 1993;5(2):199\u2013220.","journal-title":"Knowl Acquisition"},{"issue":"1","key":"2584_CR29","doi-asserted-by":"publisher","first-page":"121","DOI":"10.1186\/s12911-024-02526-y","volume":"24","author":"A Choudhury","year":"2024","unstructured":"Choudhury A, Janssen E, Bongers BC, van Meeteren NLU, Dekker A, van Soest J. Colorectal cancer health and care quality indicators in a federated setting using the personal health train. BMC Med Inf Decis Mak. 2024;24(1):121.","journal-title":"BMC Med Inf Decis Mak"},{"issue":"3","key":"2584_CR30","doi-asserted-by":"publisher","first-page":"459","DOI":"10.1016\/j.radonc.2016.10.002","volume":"121","author":"A Jochems","year":"2016","unstructured":"Jochems A, Deist TM, van Soest J, Eble M, Bulens P, Coucke P, et al. Distributed learning: developing a predictive model based on data from multiple hospitals without data leaving the hospital \u2013 a real life proof of concept. Radiother Oncol. 2016;121(3):459\u201367.","journal-title":"Radiother Oncol"},{"issue":"1","key":"2584_CR31","doi-asserted-by":"publisher","first-page":"4006","DOI":"10.1038\/ncomms5006","volume":"5","author":"HJWL Aerts","year":"2014","unstructured":"Aerts HJWL, Velazquez ER, Leijenaar RTH, Parmar C, Grossmann P, Carvalho S, et al. Decoding tumour phenotype by noninvasive imaging using a quantitative radiomics approach. Nat Commun. 2014;5(1):4006.","journal-title":"Nat Commun"},{"issue":"2","key":"2584_CR32","doi-asserted-by":"publisher","first-page":"344","DOI":"10.1016\/j.ijrobp.2017.04.021","volume":"99","author":"A Jochems","year":"2017","unstructured":"Jochems A, Deist TM, El Naqa I, Kessler M, Mayo C, Reeves J, et al. Developing and validating a survival prediction model for NSCLC patients through distributed learning across 3 countries. Int J Radiat Oncol*Biol*Phys. 2017;99(2):344\u201352.","journal-title":"Int J Radiat Oncol*Biol*Phys"},{"issue":"8","key":"2584_CR33","doi-asserted-by":"publisher","first-page":"655","DOI":"10.3109\/09638288.2014.935875","volume":"37","author":"VM Alford","year":"2015","unstructured":"Alford VM, Ewen S, Webb GR, McGinley J, Brookes A, Remedios LJ. The use of the international classification of functioning, disability and health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review. Disabil Rehabil. 2015;37(8):655\u201366.","journal-title":"Disabil Rehabil"},{"issue":"5","key":"2584_CR34","doi-asserted-by":"publisher","first-page":"1225","DOI":"10.1007\/s11136-004-4773-0","volume":"14","author":"A Cieza","year":"2005","unstructured":"Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Qual Life Res. 2005;14(5):1225\u201337.","journal-title":"Qual Life Res"},{"issue":"4","key":"2584_CR35","doi-asserted-by":"publisher","first-page":"212","DOI":"10.1080\/16501970510040263","volume":"37","author":"G Stucki","year":"2005","unstructured":"Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37(4):212\u20138.","journal-title":"J Rehabil Med"},{"issue":"7796","key":"2584_CR36","doi-asserted-by":"publisher","first-page":"491","DOI":"10.1038\/d41586-020-00505-7","volume":"578","author":"B Mons","year":"2020","unstructured":"Mons B. Invest 5% of research funds in ensuring data are reusable. Nature. 2020;578(7796):491.","journal-title":"Nature"},{"key":"2584_CR37","doi-asserted-by":"crossref","unstructured":"Bruynseels K, Santoni de Sio F, van den Hoven J. Digital Twins in Health Care: Ethical Implications of an Emerging Engineering Paradigm. Front Genet. 2018;9:31.","DOI":"10.3389\/fgene.2018.00031"},{"issue":"11","key":"2584_CR38","doi-asserted-by":"publisher","first-page":"e0000135","DOI":"10.1371\/journal.pdig.0000135","volume":"1","author":"DR Newman-Griffis","year":"2022","unstructured":"Newman-Griffis DR, Hurwitz MB, McKernan GP, Houtrow AJ, Dicianno BE. A roadmap to reduce information inequities in disability with digital health and natural language processing. PLOS Digit Health. 2022;1(11):e0000135.","journal-title":"PLOS Digit Health"},{"issue":"8","key":"2584_CR39","doi-asserted-by":"publisher","first-page":"e0134826","DOI":"10.1371\/journal.pone.0134826","volume":"10","author":"C Tenopir","year":"2015","unstructured":"Tenopir C, Dalton ED, Allard S, Frame M, Pjesivac I, Birch B, et al. Changes in data sharing and data reuse practices and perceptions among scientists worldwide. PLoS ONE. 2015;10(8):e0134826.","journal-title":"PLoS ONE"},{"issue":"7756","key":"2584_CR40","doi-asserted-by":"publisher","first-page":"445","DOI":"10.1038\/d41586-019-01506-x","volume":"569","author":"G Popkin","year":"2019","unstructured":"Popkin G. Data sharing and how it can benefit your scientific career. Nature. 2019;569(7756):445\u20137.","journal-title":"Nature"},{"issue":"1","key":"2584_CR41","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1177\/1054773817722690","volume":"28","author":"ER Eisenhauer","year":"2019","unstructured":"Eisenhauer ER, Tait AR, Rieh SY, Arslanian-Engoren CM. Participants\u2019 understanding of informed consent for biobanking: a systematic review. Clin Nurs Res. 2019;28(1):30\u201351.","journal-title":"Clin Nurs Res"},{"issue":"1\u20132","key":"2584_CR42","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1162\/dint_a_00027","volume":"2","author":"A Landi","year":"2020","unstructured":"Landi A, Thompson M, Giannuzzi V, Bonifazi F, Labastida I, da Silva Santos LOB, Roos M. The A of FAIR\u2013as open as possible, as closed as necessary. Data Intell. 2020;2(1\u20132):47\u201355.","journal-title":"Data Intell"}],"container-title":["BMC Medical Informatics and Decision Making"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12911-024-02584-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12911-024-02584-2\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12911-024-02584-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T16:42:13Z","timestamp":1719506533000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcmedinformdecismak.biomedcentral.com\/articles\/10.1186\/s12911-024-02584-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,6,27]]},"references-count":42,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["2584"],"URL":"https:\/\/doi.org\/10.1186\/s12911-024-02584-2","relation":{},"ISSN":["1472-6947"],"issn-type":[{"value":"1472-6947","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,27]]},"assertion":[{"value":"4 April 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 June 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 June 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This study was performed in accordance with the Declaration of Helsinki. This study was assessed by the local medical ethical committee AzM\/UM (METC AzM\/UM) and was considered not applicable to the Medical Research Involving Human Subject Act (number 2019\u2009\u2212\u20091426). Participant informed consent was obtained under the declaration of no objection.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"n\/a.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Johan van Soest reports a relationship with Medical Data Works B.V. that includes: equity or stocks. Andre Dekker reports a relationship with Medical Data Works B.V. that includes: equity or stocks. The other authors have no competing interests to declare.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"184"}}