Repurposing electronic health data for clinical research and beyond: Experiences from a specialised neurorehabilitation clinic treating patients with acquired brain injury

TY - ABST

T1 - Repurposing electronic health data for clinical research and beyond

T2 - Gemeinsame Jahrestagung der Deutschen Gesellschaft für Neurorehabilitation e. V. zusammen mit der OeGNR und der<br/>SGNR

AU - Pommerich, Uwe M.

AU - Kjeldsen, Simon Svanborg

AU - Hansen, Jakob

AU - Skovbjerg, Frederik

AU - Honoré, Helene

AU - Severinsen, Kåre

AU - Nielsen, Jørgen Feldbæk

PY - 2023/12

Y1 - 2023/12

N2 - Introduction: In Denmark, rehabilitation after acquired brain injury (ABI) is defined in a national guideline [1]. The provision of rehabilitation according to this guideline coverspatients with e. g. stroke, traumatic brain injury, encephalitis or encephalopathy. In addition, the complexity of rehabilitation is defined on three service levels (highlyspecialised, specialised and basic). Across the five administrative regions (figure 1), two inpatient rehabilitation facilities provide comprehensive rehabilitation for severe acquired brain injury at the highly specialised service level. In addition, 14 facilities provide rehabilitation at the specialised service level (moderate to severe injury) [2]. Hammel Neurorehabilitation Centre – University Research Clinic (HNC) is one of two tertiary care inpatient rehabilitation facilities and provides post-acute rehabilitation both on the highly specialised and specialised service levels. Currently, HNC provides 113 beds across 11 wards, including a paediatric and neuro-intensive step-down ward. Annually, circa 750 patients are admitted, with a median length of stay of 49 days (IQR 29–71) in 2022. An electronic healthcare record-system was implemented at HNC in late 2011 when the Central Denmark Region rolled out the corresponding software to all hospitals. Since then, routinely gathered health data have been increasingly repurposed from its primary treatment use to secondary data work e.g. aiding quality assurance, research, and organisational management. Objectives: The objective of this abstract is to present ourapproach to circular data work. This work will be exemplified with some of the ongoing research, clinical data support and quality assurance projects.Methods: HNC maintains a nightly updated local database containing demographic and clinical information on all former and current patients. After approval from relevantauthorities [3], these data can be extracted and used for research and quality assurance purposes. The vision underlying our data work is a circular approach, denominatedthe Health Data Cycle. Establishing and maintaining the cycle entails support of clinical staff in meaningful documentation to enable repurposing for secondary use, managing the local database, conducting or supporting research projects, and finally collaborating with the clinical staff in the contextual interpretation and preparation for potentialimplementation.Results: Our local database entails information on approximately 7500 rehabilitation patients with acquired brain injury (figure 2). Currently, three research projects use thedatabase for prognosis research (function at discharge, tube feeding, decannulation) according to the Prognosis Research Strategy Framework [4]. Other research projectsuse the database to investigate e. g. incidence of and risk factors for in-hospital urinary tract infections or psychotropic drug prescription practices.Conclusion: The repurposing of routinely gathered electronic health data has yielded valuable insights into the rehabilitation practice at our highly specialised inpatient rehabilitation facility.References:1. Danish Health Authority. Organisation of rehabilitation for adults with acquiredbrain injury (in Danish). Danish Health Authority 2011.2. Schmidt M, Schmidt SAJ, Adelborg K et al. The Danish health care system and epi-demiological research: from health care contacts to database records. Clin Epide-miol 2019;11:563–591. doi: 10.2147/CLEP.S1790833. The Health Act (in Danish) 2022.4. Steyerberg EW, Moons KGM, van der Windt DA et al. Prognosis Research Strategy(PROGRESS) 3: Prognostic Model Research. PLoS Med 201310(2):e1001381. doi:10.1371/journal.pmed.1001381

AB - Introduction: In Denmark, rehabilitation after acquired brain injury (ABI) is defined in a national guideline [1]. The provision of rehabilitation according to this guideline coverspatients with e. g. stroke, traumatic brain injury, encephalitis or encephalopathy. In addition, the complexity of rehabilitation is defined on three service levels (highlyspecialised, specialised and basic). Across the five administrative regions (figure 1), two inpatient rehabilitation facilities provide comprehensive rehabilitation for severe acquired brain injury at the highly specialised service level. In addition, 14 facilities provide rehabilitation at the specialised service level (moderate to severe injury) [2]. Hammel Neurorehabilitation Centre – University Research Clinic (HNC) is one of two tertiary care inpatient rehabilitation facilities and provides post-acute rehabilitation both on the highly specialised and specialised service levels. Currently, HNC provides 113 beds across 11 wards, including a paediatric and neuro-intensive step-down ward. Annually, circa 750 patients are admitted, with a median length of stay of 49 days (IQR 29–71) in 2022. An electronic healthcare record-system was implemented at HNC in late 2011 when the Central Denmark Region rolled out the corresponding software to all hospitals. Since then, routinely gathered health data have been increasingly repurposed from its primary treatment use to secondary data work e.g. aiding quality assurance, research, and organisational management. Objectives: The objective of this abstract is to present ourapproach to circular data work. This work will be exemplified with some of the ongoing research, clinical data support and quality assurance projects.Methods: HNC maintains a nightly updated local database containing demographic and clinical information on all former and current patients. After approval from relevantauthorities [3], these data can be extracted and used for research and quality assurance purposes. The vision underlying our data work is a circular approach, denominatedthe Health Data Cycle. Establishing and maintaining the cycle entails support of clinical staff in meaningful documentation to enable repurposing for secondary use, managing the local database, conducting or supporting research projects, and finally collaborating with the clinical staff in the contextual interpretation and preparation for potentialimplementation.Results: Our local database entails information on approximately 7500 rehabilitation patients with acquired brain injury (figure 2). Currently, three research projects use thedatabase for prognosis research (function at discharge, tube feeding, decannulation) according to the Prognosis Research Strategy Framework [4]. Other research projectsuse the database to investigate e. g. incidence of and risk factors for in-hospital urinary tract infections or psychotropic drug prescription practices.Conclusion: The repurposing of routinely gathered electronic health data has yielded valuable insights into the rehabilitation practice at our highly specialised inpatient rehabilitation facility.References:1. Danish Health Authority. Organisation of rehabilitation for adults with acquiredbrain injury (in Danish). Danish Health Authority 2011.2. Schmidt M, Schmidt SAJ, Adelborg K et al. The Danish health care system and epi-demiological research: from health care contacts to database records. Clin Epide-miol 2019;11:563–591. doi: 10.2147/CLEP.S1790833. The Health Act (in Danish) 2022.4. Steyerberg EW, Moons KGM, van der Windt DA et al. Prognosis Research Strategy(PROGRESS) 3: Prognostic Model Research. PLoS Med 201310(2):e1001381. doi:10.1371/journal.pmed.1001381

KW - Neurorehabilitation

KW - Health data

KW - Acquired Brain Injury

UR - https://www.hippocampus.de/media/316/cms_657c1d4f61927.pdf

M3 - Conference abstract in journal

SN - 0947-2177

VL - 29

SP - 63-S64

JO - Neurologie und Rehabilitation

JF - Neurologie und Rehabilitation

IS - S2

M1 - KV4-07

Y2 - 14 December 2023 through 16 December 2023

ER -