Palliative Care: Improving research through standardized informatics Open Access

Vasudevan, Sowmya (Fall 2018)

Permanent URL: https://etd.library.emory.edu/concern/etds/79407z254?locale=en
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Abstract

Purpose: The goal of the thesis is to develop an information systems architecture for supporting palliative care clinical research using a standardized methodology. The overarching goal of palliative care clinical research is to improve patient enrollment and outcomes.

Methods: Based upon the collection of requirements from an expert panel, a solutions architecture for the palliative care research registry was developed. The solution uses standardized methodology to obtain data from the data warehouse and applies a preliminary algorithm to identify cancer patients in need of palliative care treatment. Criteria were developed and validated with subject matter experts to ensure that it met the requirements for selection from the data warehouse. Standardized queries were developed in the hospital data warehouse system to extract relevant palliative care patient information for cancer patients. A prototype research database was developed to store the de-identified palliative care patient information. Queries were developed in the research database to combine data and present information for research studies. Also, visual analytics templates were developed using Tableau.

Results: A registry prototype was built which could be used as a model for a palliative care research registry. Preliminary criteria were identified in the database to select cancer patients eligible for palliative care. Preliminary visual analytics was performed to understand the palliative care utilization. Data from the registry prototype was analyzed and used in palliative care research papers.

Conclusions: The study provided an opportunity to explore palliative care research data needs. A standardized methodology was selected to build a registry along with validated criteria for identifying cancer patients in need of palliative care. The resulting data architecture provided a useful illustration of how a standardized palliative care registry could support and improve palliative care enrollment.

Table of Contents

Chapter 1: Introduction

Introduction and Background

Problem Statement

Purpose Statement

Method

Significance

Research Questions

Chapter 2: Review of Literature

Introduction

Literature Review Strategy

Literature Results Overview

Palliative Care Referral by Physicians

Outpatient Palliative Care Utilization among Cancer Patients

Electronic Alerts for Palliative Care

Referral Criteria for Palliative care

Palliative Care Trigger Algorithm

Chapter 3: Methodology

Introduction

Research Questions

Method

A Plan for the Palliative Care Registry

Purpose of the Registry

Registry Prototype

Solutions Architecture for the Proposed Palliative Care Registry

Chapter 4: Results          

Introduction

Findings              

Conclusion         

Limitations and Delimitations

Limitations         

Delimitations    

References     

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