Collaborative Health IT Research
This was a research project done in partnership with the UVA Cancer Center and Starship Health Technologies, funded by the National Cancer Institute. The main goal was to design health information technology to support collaborative work across healthcare professionals, patients, and care partners. I worked in a team of four on the needs analysis phase of the project, where we gathered and analyzed qualitative data to help inform the design of a future mobile app for cancer patients and those that support them.
Broad goal: Connect cancer patients with healthcare resources and support systems through collaborative health information technology
Role: Research assistant
Contributions: Qualitative data collection and analysis, qualitative coding in Dedoose, writing and summarizing research findings
Duration: 1 year (part time as a student)
Context & Recruitment
Role definition and recruitment of patient navigators
The role of a patient navigator is to guide patients through the healthcare system and connect them with the resources they need, as well as assist them in overcoming any barriers throughout their journey.
For this study, patient navigators were recruited through a state-wide professional organization of patient navigators. They were provided with a link to an online recruitment survey that asked for basic contact information, and those that provided valid information were contacted for an interview. Patient navigators were eligible for the study if they were over the age of 18 and worked professionally as a patient navigator.
Cancer survivors were recruited from a collaborative information exchange network that houses a database of cancer patients who have expressed interest in participating in research studies. Those with a diagnosis within their lifetime of colorectal, breast, or lung cancer and over the age of 18 were eligible to participate in the study, and were contacted by the research team. If interested in participating in the study, an online recruitment survey that asked for basic contact information was sent out, and investigators contacted those that were eligible to participate in an interview.
Recruitment of cancer survivors
Qualitative data collection
Cancer survivors and patient navigators were interviewed over the phone or on an online platform. Our aim during these interviews was to understand each participant’s experience as either a cancer patient or a patient navigator, and the relationship between the two roles. In addition, we wanted to learn how both patients and patient navigators interact with the rest of the patient’s support system, including healthcare systems, professionals, and informal caretakers.
My role during the data collection process was to join the interview calls, take notes, and de-identify the recorded transcripts from each interview.
Data analysis approach
Once interview recordings were transcribed and de-identified, the data was analyzed in Dedoose using an inductive approach to qualitative content analysis.
I worked in a team with two other research assistants to initially gather impressions of the data, and we met with our senior researcher and professor to discuss the implications.
Based on this process, I worked with one other research assistant to conduct initial qualitative coding of four transcripts and drafted a preliminary codebook, which was then reviewed by the whole team and iterated upon. This process was repeated three times with the remaining transcripts.
The resulting codebook was reviewed by the full study team, where we took in feedback and made any necessary edits; the codebook was finalized during this discussion.
Qualitative codebook
A codebook outlines the themes or categories, otherwise known as “codes”, that were used to conduct data analysis on the study.
Our qualitative content analysis yielded three overarching themes (or three main codes):
Code 1: Relationships
We defined the types of collaborative relationships, as well as interaction types for each relationship.
The codebook was structured into four columns: code, subcode, babycode, and examples (excerpts from transcripts):
Excerpts were organized under this category to understand the action being performed across informal and formal roles during collaborative actions. Sub-themes in this category included daily tasks, decisions making, education, resource allocation, scheduling, and support. When appropriate, these categories were further defined to identify clinical and nonclinical specific actions.
Code 2: Tasks
Code 3: Contextual Factors
Excerpts were organized under this category to capture the additional factors that relate to the way collaborative actions take place. Sub-themes included referrals, support groups, technology, systemic barriers, and systemic facilitators.
Outcomes & timeline
After a significant part of the qualitative research was conducted, we shared and discussed our findings with the greater research team and Starship Health Technologies to help structure and inform the future app design that would connect cancer patients with their support system. I also assisted in writing sections for a larger research paper that would summarize our work.
Timeline overview of the entire project (I only participated in the needs analysis phase)