Designing and Implementing a Standardized Electronic Health Record (EHR) Template for Transition of Care in Sickle Cell Disease (SCD)

Introduction

Sickle cell disease (SCD) is the most common inherited hemoglobinopathy, affecting approximately 100,000 people in the United States. Causing a variety of acute and chronic complications across the lifespan, individuals with SCD require complex care coordination across many facets of the health care system. During the period of transition between health care systems, patients are particularly vulnerable to increased morbidity and complications due to fractured care and inadequate transfer of information.

Electronic health records (EHR) systems can be used to improve adherence to guideline-based care in chronic conditions, like Down syndrome, but require programming and implementation by each individual health system in their specific EHR. Additionally, without a standardized set of elements to be included in a transition of care summary, vital information in the medical record may be lost. The National Alliance of Sickle Cell Centers (NASCC) recently defined the essential elements to be included in a transition summary for patients with SCD through a modified Delphi consensus initiative. This project then used these elements to create an SCD-specific template in 2 commercially available EHRs and implemented the template into clinical use.

Methods

A panel of 6 NASSC SCD experts (3 Adult and 3 Pediatric Hematologists) led the modified Delphi consensus initiative. The project consisted of three rounds; (1) Panel development of pre-formative statements around both essential elements for a transition summary; (2) Discussion among all SCD stakeholders at NASCC's 2^nd Annual Conference (June 2023) to refine and approve predeveloped elements; and (3) Survey revision based on round two results and a final survey among NASCC Directors to vote on the final list of essential elements (July 2023). Consensus was defined as ≥ 70% of respondents positively endorsing (Likert score ≥5, scale 1-9) an item, commensurate with the use of the Delphi-technique in health care settings.

A corresponding transition summary note template was programmed in each of 2 commercially available EHRs (EPIC^TM and Cerner/Oracle^TM) at one pediatric and one adult sickle cell center. SCD clinicians then piloted the use of these templates in their clinical workflow. Feasibility and acceptability are being assessed using standardized survey tools.

Results

We successfully developed a template for SCD transition of care in each of 2 the most widely used EHRs (EPIC and CERNER) that included all the essential elements defined by the NASCC consensus, including relevant past SCD history, demographic information, and disease modifying therapy information. Use of these templates has been initiated by the SCD clinical teams; feasibility and acceptability will be assessed through a standardized survey approximately 8 weeks after implementation. A care gap report to track outcomes like immunization gaps is also being developed to identify areas for improvement in the SCD population Further data on feasibility, usability, and illustrations of the tools will be presented along with findings of care gap report implementation.

Conclusions

Creation of these transition templates serves as an important first step in standardizing the transfer of information in SCD. Planned next steps include implementation of the templates at additional clinical sites and ongoing refinement based on feasibility and acceptability assessments.

Guarino:Novartis: Consultancy. Rivlin:Fulcrum: Membership on an entity's Board of Directors or advisory committees; CLS Behring: Other: travel grant. Jain:Hemex Health: Consultancy; Sanofi: Speakers Bureau; NovoNordisk: Speakers Bureau; Blue Bird Bio: Other: End point adjudication committee ; Beam Therapeutics: Other: End point adjudication committee. Desai:Chiesi: Honoraria; Bluebird Bio: Honoraria; National Marrow Donor Program: Other: Medical Monitor. Kanter:Optum United Health: Consultancy; GSK: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Chiesi: Honoraria, Membership on an entity's Board of Directors or advisory committees; EcoR1: Consultancy; GLG Pharma: Consultancy; Novartis: Consultancy; Watkins, Lourie, Roll & Chance: Consultancy; Emerging Therapy Solutions: Honoraria; Takeda: Research Funding; Bausch: Consultancy; Health Resources and Services Administration: Other: Federal Funding; Novo Nordisk: Consultancy, Research Funding; Vifor: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Beam Tx: Consultancy, Research Funding; Bioline Rx: Consultancy; Merck: Membership on an entity's Board of Directors or advisory committees; Guidepoint Global: Consultancy; bluebird bio: Consultancy, Research Funding; Fulcrum: Consultancy; GlycoMimetics: Membership on an entity's Board of Directors or advisory committees; Sanofi: Consultancy; Affimmune: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Bristol Myers Squibb: Consultancy; NIH/NHLBI: Other: Federal Funding; CDC: Other: Federal Funding. Lanzkron:Merck: Consultancy; Glycomimetics: Consultancy; PCORI: Research Funding; Agios: Membership on an entity's Board of Directors or advisory committees; Takeda: Research Funding; Pfizer: Current holder of stock options in a privately-held company; Novo Nordisk: Membership on an entity's Board of Directors or advisory committees; CSL-Behring: Research Funding; Teva: Current holder of stock options in a privately-held company; bluebird bio: Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy; HRSA: Research Funding; Novartis: Consultancy, Research Funding.