Harnessing the power of the electronic health record for ALS research and quality improvement: CReATe CAPTURE-ALS and the ALS Toolkit

Abstract

The electronic health record (EHR) is designed principally to support the provision and documentation of clinical care, as well as billing and insurance claims. Broad implementation of the EHR, however, also yields an opportunity to use EHR data for other purposes, including research and quality improvement. Indeed, effective use of clinical data for research purposes has been a long-standing goal of physicians who provide care for patients with ALS, but the quality and completeness of clinical data, as well as the burden of double data entry into the EHR and into a research database, have been persistent barriers. These factors provided motivation for the development of the ALS Toolkit, a set of interactive digital forms within the EHR that enable easy, consistent, and structured capture of information relevant to ALS patient care (as well as research and quality improvement) during clinical encounters. Routine use of the ALS Toolkit within the context of the CReATe Consortium's institutional review board-approved Clinical Procedures to Support Research in ALS (CAPTURE-ALS) study protocol, permits aggregation of structured ALS patient data, with the goals of empowering research and driving quality improvement. Widespread use of the ALS Toolkit through the CAPTURE-ALS protocol will help to ensure that ALS clinics become a driving force for collecting and aggregating clinical data in a way that reflects the true diversity of the populations affected by this disease, rather than the restricted subset of patients that currently participate in dedicated research studies.

Keywords: amyotrophic lateral sclerosis; electronic medical record; guidelines; motor neuron disease; quality improvement.

Figure 1:

Clinical Assessment Form (partial screenshot) showing the ALS Clinical Assessment section (that captures key events since the last clinical visit and principal concerns the patient would like to address), as well as details of each domain: Respiratory, Sleep and Energy; and Bulbar, Gastrointestinal and Genitourinary. (Domains not shown: Gross Motor, Mobility and ADLs; Pain; Psychosocial; Cognitive, Behavioral, Mood and Pseudobulbar Affect; Treatments; Life Planning Assistance; and Research.) This form utilizes skip logic. For example, when the gastrostomy placed button is selected (shown in navy blue), the user is prompted to enter the date on which the gastrostomy tube was placed. The form also utilizes tristate buttons that are colored green (with a negative sign) when absent, colored red (with a positive sign) when present, and light-blue when information was not collected. The ALS Toolkit navigator is also shown in the left-hand margin. © 2021 Epic Systems Corporation. Used with permission.

Figure 2.

A screenshot shows the completed cranial neuromuscular exam form, documenting the presence of atrophy and fasciculations in the lower face and tongue (but not the upper face), along with mild facial weakness, slow tongue movements, and a moderate degree of tongue weakness. The jaw jerk and gag reflexes are both present but not pathologically brisk, and speech is dysarthric. Pseudobulbar affect is present. Additional clinical notes are captured in the Comment box. © 2021 Epic Systems Corporation. Used with permission.