CHOICE: Coalition of Hospices Organized to Investigate Comparative Effectiveness (Pennsylvania)

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More than 5,000 hospices provide care for over 1.5 million patients every year. Hospice patients receive care in their own homes, nursing homes, hospitals, and dedicated hospice units. Comparative effectiveness research may help hospices provide higher quality care; however, research in this setting is difficult to conduct because patients enroll in hospice late in the course of illness.

This project studied the feasibility of abstracting quality measures from the electronic medical record (EMR) at 12 hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE) network. CHOICE is a collaborative of hospices that have agreed to share their data for research purposes. Participating hospices ranged in size from 400 to 1,700 patients, were located in 11 States, and were not-for-profit organizations.

The specific aims of this project were as follows:

  • Evaluate the feasibility and validity of abstracting quality measures from EMRs among a network of hospice members. 
  • Assess whether the measures that are abstracted are associated with families' perceptions of care. 
  • Identify which quality measures hospice stakeholders identify as the highest priority for use in performance improvement and clinical trials. 

The project established that extracting EMR data from hospice on a large scale was feasible. Key data elements included demographic data, indicators of illness severity, health outcomes, and indicators of quality. The data were used to track preferences regarding site of death, compare underrepresented hospice subpopulations such as children and older adults in assisted living, and develop an acuity index for use in future studies. Analyses identified a significant association between families’ perception of quality of care and hospice staff visits on the last day of life. The CHOICE steering committee identified the following indicators for future data collection and benchmarking: 1) pain and dyspnea screening on admission, 2) management of opioid induced constipation, 3) preferences regarding resuscitation and hospitalization, and 4) visits by hospice staff on the patient’s last day of life.

This project laid the foundation for using EMR data for comparative effectiveness research and an initial proof of concept for a national quality improvement research network for hospice care.

CHOICE: Coalition of Hospices Organized to Investigate Comparative Effectiveness - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS08-269: Exploratory and Developmental Grant to Improve Health Care Quality Through Health Information Technology (IT) (R21)
  • Grant Number: 
    R21 HS 021780
  • Project Period: 
    September 2012 – September 2014
  • AHRQ Funding Amount: 
  • PDF Version: 
    (PDF, 228.63 KB)

Summary: Currently, more that 1.5 million patients are cared for in hospice settings and this number is growing. Patients in hospice care have numerous symptoms and complex care needs; therefore, historically it has been extremely difficult to research end-of-life care and build an evidence base for care. Reasons for the difficulty include high costs of hospice-based randomized controlled trials and ethical concerns of hospice-based primary data collection. The Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE) was created to address the need for improved research methods.

The research team is assessing the feasibility of using quality measures by first identifying the proportion of patient’s records from which key palliative care quality indicators can be abstracted from the electronic health record (EHR). Secondly, they are testing the validity of data abstracted from the EHR as compared to data abstracted from trained nurses. The project is also looking at whether hospice care is focused on patient and family-centered outcomes. The research team is reviewing survey data from the Family Evaluation of Hospice Care survey and associating it with clinical outcomes data. The association’s analysis will look for those EHR-based quality indicators that have the strongest associations with families’ perceptions of care.

The third component of this research will be identifying the EHR-based quality indicators that are the highest priority for use in performance improvement initiatives and clinical trials. The research team will host a stakeholder panel to review the EHR quality indicators and associations from the first two phases of the research.

The potential impact of the CHOICE network will be to provide rigorous end-of-life research. By establishing the feasibility and validity of CHOICE’s data collection, and by defining stakeholders’ priorities for performance improvement and research, the project will lay the foundation for a line of comparative effectiveness research that can drive meaningful improvements in the quality of hospice care.

Specific Aims:

  • Evaluate the feasibility and validity of using quality measures abstracted from hospice electronic records. (Ongoing)
  • Define associations between quality indicators and families’ perceptions of care. (Upcoming) 
  • Identify high-priority targets for improvement. (Upcoming)

2012 Activities: The research team has seven hospices representing approximately 69,000 patients engaged in the CHOICE data network. In addition to these, they have 21 hospices committed to submitting data. The research team began to abstract data from the seven hospices and to explore the best ways to code the data. The coding process included identifying data dictionaries for commonly used data and developing coding schemes for other data elements. For example, there are dictionaries for codes for standard data fields like ethnicity but not for others such as functional status. The team is also working through a coding process for the granular data and open-text field data, such as social worker notes, that are not as easily coded. They have found that important clinical data, such as insertion of a Foley catheter, may be in open text. As part of the data cleaning process, the team reconciled dates in the records that are illogical. The team has worked through solutions for this and other obvious data errors that can be applied to all the EHRs in their research database.

In addition to the clinical data coding and cleaning, the research team began merging clinical and family satisfaction data. Thus far, they have family satisfaction data from one hospice and commitments from three additional hospices.

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

Target Population: End-of-Life Care*, Elderly*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Knowledge Creation

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

CHOICE: Coalition of Hospices Organized to Investigate Comparative Effectiveness - Final Report

Casarett D. CHOICE: Coalition of Hospices Organized to Investigate Comparative Effectiveness - Final Report. (Prepared by the University of Pennsylvania under Grant No. R21 HS021780). Rockville, MD: Agency for Healthcare Research and Quality, 2014. (PDF, 68.71 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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