"What do you want waiting for you?" A qualitative study of patient advocate involvement in cancer research Public
Schroer, Grace Ellen (2014)
Published
Abstract
Background: Patient advocates have been involved in guiding and advising the cancer research process for more than two decades. In recent years, advocate involvement in research has increasingly been required. Despite their historic and expanding presence, little research has been done into the activities and impacts of patient advocates in research. The goal of this qualitative study was to thoroughly document the origins and context of patient advocacy before conducting interviews designed to answer two primary research questions: 1) What is the role of the patient advocate in cancer research? 2) How does the work of patient advocates impact cancer research?
Methods: Semi-structured one-on-one phone interviews were conducted with 13 self-identified patient advocates in cancer research. Purposive and snowball sampling techniques were used. Interviews were recorded and transcribed verbatim, and annotations and memos created throughout the data collection and analysis process. Inductive and deductive codes were arranged hierarchically to create a coding tree and codebook. Each interview was coded in MAXQDA 11. Cross-case comparisons were performed for relevant codes.
Results: Participants said their primary role as patient advocates in research was to provide the patient perspective to researchers. By bringing a patient perspective to researchers, advocates hope to have an impact by ensuring that research meets the needs of patients as much as possible. Participants described several approaches used to establish their credibility and strategies used in their work with researchers to meet their goal of aligning research with patient needs, but their work is hampered by significant barriers. Advocate work with researchers is issue-driven and includes activities such as reviewing grant applications, supporting grant applications, providing advice on clinical research, and providing advice on basic research.
Conclusions: The lack of research around patient advocacy is troubling. As advocates, researchers, and the research system invest time and resources in involving advocate perspectives, it is important to have a clearer understanding of the effects of that involvement. Furthermore, it is essential to better define what activities are most likely to have positive impacts so that advocate involvement can be as effective as possible.
Table of Contents
CHAPTER ONE: INTRODUCTION 1
Defining Patient Advocacy in Research
1Patients, Consumers, and Users
1Assessing Advocacy
2Where in "Research" Does Patient Advocacy in Research Occur?
4Current Patient Advocacy Programs in the United States
6 Theory: Social Ecological Model of Medical Research 13Need for this Study
16Cancer Research as a National Priority
16Minimal Evidence Base for Advocacy in Cancer Research
17Research Questions
17CHAPTER TWO: LITERATURE REVIEW
19Patient Advocacy in the United States
19Origins of Consumer Health Movements
19Origins of Breast Cancer Activism
21Advocacy and Medical Research Funding
28Issues of Background and Legitimacy
44Considering the Value of Patient Advocacy
48Philosophical Arguments
48 Face Validity 50Research Evaluating Patient Advocacy in the United States
53International Research
57 CHAPTER THREE: METHODS 65 Participants 65 Sampling 65 Instrument 66Patient Advocacy Measures
66Demographic Information
68 Procedures 68Institutional Review Board Approval
68 Study Consenting 68 Data Collection 69 Data Management 70 Data Analysis 70 CHAPTER FOUR: RESULTS 72Participant Characteristics
72Demographic Characteristics
72Advocacy Characteristics
72Overview of Key Themes
73Research Question 1: What is the role of the patient advocate in cancer research?
75Ways to Establish Credibility
75Strategies for Dealing with Researchers
81Barriers to Action
85Research Question 2: How does the work of patient advocates impact cancer research?
91Issue-Driven Activities
91Overview of Selected Activities
95 CHAPTER FIVE: DISCUSSION 101Proposed Logic Model for Future Evaluations of Patient Advocacy
101 Inputs and Activities 101Outputs and Outcomes
106Strengths and Limitations
107 Implications 108Recommendations for Future Research
109 Conclusions 110 REFERENCES 112
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