{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T21:59:01Z","timestamp":1776376741830,"version":"3.51.2"},"reference-count":31,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,8,30]],"date-time":"2023-08-30T00:00:00Z","timestamp":1693353600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>With the increasing complexity of haemophilia care and the advent of numerous therapeutic innovations, there is an unmet need for documentation and data collection tools tailored to people with haemophilia (PwH). To date, no fully integrated haemophilia\u2010specific electronic health record (EHR) has been described in the literature.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To evaluate the feasibility of integrating a haemophilia\u2010specific navigator into the Epic EHR.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Based on clinical experience and registry datasets, we identified key variables describing both PwH and carriers of haemophilia. These were then incorporated into a REDCap database, which served as a starting point for the development of a comprehensive haemophilia flowsheet. We built a dedicated haemophilia navigator within Epic that includes a flowsheet featuring up to 212 variables, as well as customised note templates and patient lists integrating data from the haemophilia flowsheet.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>It was feasible to develop a haemophilia navigator within Epic over the course of 12 months. The navigator's flowsheet enables systematic and comprehensive clinical assessment of PwH and carriers, while customised patient lists provide a quick summary of each patient's profile to the haemophilia treatment centre staff and highlight issues that require an intervention. In our clinical practice, patients actively participated in the new documentation process and responded positively to the navigator.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Adapting EHRs to the needs of PwH and carriers promotes holistic care for this population and provides an opportunity for patient empowerment. Such haemophilia\u2010specific EHRs are expected to promote standardisation of care and facilitate the collection of registry data on a national and international level.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14846","type":"journal-article","created":{"date-parts":[[2023,8,30]],"date-time":"2023-08-30T16:36:21Z","timestamp":1693413381000},"page":"1219-1225","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Building a haemophilia\u2010specific navigator in Epic\u00ae Electronic Health Records: Single\u2010centre preliminary experience"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8270-8819","authenticated-orcid":false,"given":"Evelien","family":"Krumb","sequence":"first","affiliation":[{"name":"Haemostasis and Thrombosis Unit Division of Adult Haematology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicolas","family":"Vanlangendonck","sequence":"additional","affiliation":[{"name":"Haemostasis and Thrombosis Unit Division of Adult Haematology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2222-0357","authenticated-orcid":false,"given":"Catherine","family":"Lambert","sequence":"additional","affiliation":[{"name":"Haemostasis and Thrombosis Unit Division of Adult Haematology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S\u00e9bastien","family":"Lobet","sequence":"additional","affiliation":[{"name":"Haemostasis and Thrombosis Unit Division of Adult Haematology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"},{"name":"Secteur de kin\u00e9sith\u00e9rapie Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"},{"name":"Neuromusculoskeletal Lab (NMSK) Secteur des Sciences de la Sant\u00e9 Institut de Recherche Exp\u00e9rimentale et Clinique Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"An","family":"Van Damme","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5429-8437","authenticated-orcid":false,"given":"C\u00e9dric","family":"Hermans","sequence":"additional","affiliation":[{"name":"Haemostasis and Thrombosis Unit Division of Adult Haematology Cliniques universitaires Saint\u2010Luc Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,8,30]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1182\/hem.V14.1.6993"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102516.2011.02671.x"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph19020646"},{"key":"e_1_2_11_5_1","unstructured":"folio3 Digital Health.Which Hospitals Use EPIC software in different states? 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