Improving Sickle Cell Transitions of Care Through Health Information Technology (Virginia)

Project Final Report (PDF, 1.93 MB)

Project Details - Ended

Project Categories

Summary:

The use of health information technology (IT) has been shown to be helpful in improving communication needs of those with chronic diseases, including sickle cell disease (SCD), and to improve transitions in care. People with SCD experience multiple transitions of care as a result of the disease’s chronicity and the frequency of acute and chronic events requiring care. For youths with SCD there are two important transitions that occur: the transition from home to the emergency department (ED) in the context of an acute episode; and the transition from the pediatric health care setting to the adult health care setting for ongoing chronic care management. These transitions are more likely to be successful when accurate health information is communicated effectively and tailored to the type of transition taking place.

This project conducted an environmental scan, held focus groups, and conducted key informant interviews in order to develop recommendations for the design and functionality of a health IT-enabled tool designed to aid adolescents and young adults with SCD during transitions of care.

The project objectives were to:

  • Gain the necessary background knowledge, including qualitative information from key stakeholders, to establish a set of requirements that would guide the design and development of a health IT-enabled tool in future phases of work that meets patients’, families’, and providers’ needs to aid adolescents and young adults with sickle cell disease during transitions of care.
  • Develop an understanding of the environmental context, current facilitators and barriers, health data use, and needs of key stakeholders affected by sickle cell disease, including patients, families, and providers.

The team followed recommendations to narrow the development of the tool to supporting the most important care transition that impacts patients and families affected by SCD: from the home to the ED. Recommendations for the tool include that the tool should operate on a smartphone, tablet, or iPad. It should be simple to use, sleek, and modern in appearance. The tool should provide a succinct summary of the individual’s important health information, both static and dynamic information. IT developer and patient focus group participants recommended that the tool be fun to use and engaging, and require minimal data input from users. Finally, the team recommended that the tool not be tethered to a patient’s electronic health record for a given provider. Instead it should be cloud based to allow it to participate in health information exchange and pull data from multiple sources and providers.

Improving Sickle Cell Transitions of Care through Health Information Technology - 2012

Summary Highlights

  • Principal Investigator: 
  • Organization: 
  • Funding Mechanism: 
    Accelerating Change and Transformation in Organizations and Networks (ACTION II)
  • Contract Number: 
    290-10-00033I-1
  • Project Period: 
    August 2012 – May 2014
  • AHRQ Funding Amount: 
    $630,811
  • PDF Version: 
    (PDF, 320.18 KB)

Summary: Sickle cell disease (SCD) is a genetic blood disorder that produces abnormal “sickle-shaped” red blood cells that obstruct blood vessels, leading to life-long anemia, organ damage, increased potential for infections, chronic episodes of pain, and substantially shortened life spans. People with SCD experience multiple transitions of care as a result of SCD’s chronicity and the frequency of acute and chronic events requiring care. Care transitions occur when either the setting (e.g., from home-based to hospital-based care), or the focus of care (e.g., from pediatric-focused to adult-focused care) changes. When care transitions occur, it is necessary to share medical history and other types of health information. These transitions are more likely to be successful when that health information is accurate, tailored to the type of transition taking place, and communicated effectively.

Care transitions are particularly fraught for patients with SCD, few of whom have access to effective transition programs. This project will explore the potential of health information technology (IT) to ease SCD health care transitions. The project will establish a set of requirements to guide the design and development of a technology-enabled tool that meets the needs of patients, their families, and providers in care transitions.

Information will be collected in three ways. First, the project team is conducting an environmental scan to identify potentially relevant scientific literature and information that will provide contextual background about the current state of the field with regard to tool development and use, identify key issues of patients with SCD related to care transitions, and explain the context of care delivered and health data information needed to inform the content, design, and functionality of a tool. Second, the team will conduct 10 focus groups of key stakeholders including parents and caregivers of patients with SCD, providers, IT developers, and SCD patients ages 9 and older to gather qualitative information on experiences with SCD and care transitions, barriers to quality care, and use of technology to inform tool design and functionality. Finally, the team will conduct up to eight key-informant interviews with patient advocates, State Medicaid representatives, attorneys with expertise in privacy and security issues, and relevant policymakers to understand cost issues related to reimbursement by payers, need for proof of effectiveness, sustainability, and potential vehicles for facilitating and funding tool development and implementation. A final report with recommendations for the design and functionality of a health IT-enabled tool designed to aid adolescents and young adults with SCD during transitions of care will be developed.

Project Objectives: 

  • Gain the necessary background knowledge, including qualitative information from key stakeholders, to establish a set of requirements that would guide the design and development of a health IT-enabled tool in future phases of work that meets patients’, families’, and providers’ needs to aid adolescents and young adults with sickle cell disease during transitions of care. (Ongoing) 
  • Develop an understanding of the environmental context, current facilitators and barriers, health data use and needs of key stakeholders affected by sickle cell disease, including patients, families, and providers. (Ongoing) 

2012 Activities: This project started in August 2012 with the environmental scan to identify existing tools and tool components to aid transitions of care for people with SCD, focusing on technology-based and mobile health resources and a search for literature to inform the tool’s content and functionality. At the end of the year, the team had identified 80 possible tools from which it selected 40 for inclusion in the scan, completed the full text review of the articles, identified preliminary findings, and developed the template for the environmental scan report. The team developed moderator guides and recruitment activities for the focus groups. Materials for the various participating organizations’ institutional review boards were submitted. In addition, the team submitted the materials to AHRQ for the Office of Management and Budget clearance required to conduct the evaluation.

Preliminary Impact and Findings: This project has no finding to date.

Target Population: Chronic Care*: Sickle Cell Disease, Pediatric*, Teenagers

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Knowledge Creation

*This target population is one of AHRQ’s priority populations.

Improving Sickle Cell Transitions of Care Through Health Information Technology: Recommendations for Tool Development - Final Report

Citation:
The Lewin Group. Improving Sickle Cell Transitions of Care Through Health Information Technology: Recommendations for Tool Development - Final Report. Prepared under Contract 290-10-00033I-1. AHRQ Publication No. 15-0017- EF. Rockville, MD: Agency for Healthcare Research and Quality. January 2015. (PDF, 1.93 MB)
Principal Investigator: 
Document Type: 
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Technology: 
Medical Condition: 
This project does not have any related resource.

Improving Sickle Cell Transitions, Focus Group Moderator Guide: IT Developers

This is a focus group guide designed to be conducted with developers across a health care system. The tool includes questions to assess assess user's needs of electronic health records, health information exchange, personal digital assistants, and personal health records.

Year of Survey: 
2013
Survey Link: 
Improving Sickle Cell Transitions, Focus Group Moderator Guide: IT Developers (PDF, 465.97 KB) (Persons using assistive technology may not be able to fully access information in this report. For assistance, please contact Corey Mackison)
Document Type: 
Research Method: 
Population: 
Copyright Status: 
Permission has been obtained from the survey developers for unrestricted use of this survey; it may be modified or used as is without additional permission from the authors.
Organization: 

Improving Sickle Cell Transitions, Focus Group Moderator Guide: Patients

This is a focus group guide designed to be to be conducted with patients across a health care system. The tool includes questions to assess user's needs of electronic health records, health information exchange, personal digital assistants, and personal health records.

Year of Survey: 
2013
Survey Link: 
Improving Sickle Cell Transitions, Focus Group Moderator Guide: Patients (PDF, 314.77 KB)
Document Type: 
Research Method: 
Population: 
Copyright Status: 
Permission has been obtained from the survey developers for unrestricted use of this survey; it may be modified or used as is without additional permission from the authors.
Organization: 
This project does not have any related project spotlight.
This project does not have any related survey.
This project does not have any related story.
This project does not have any related emerging lesson.