UX Design, UX ResearcH    |    Georgia tech    |    2020-21
Project Aether
The healthcare industry is undergoing a revitalization of patient-centered design. However, patient-facing innovation in diagnostic imaging has largely lagged behind. The industry standard for delivery of results has led to a knowledge gap between the healthcare professional (HCP) and patient, often leading to patient anxiety and confusion regarding their condition and imaging results.

Project Aether explores innovative options to improve patient comprehension of their diagnostic imaging results. It evolves with the patient throughout their care journey to both meet expectations and deliver intuitive information.
Bridging the gap between patients and their diagnostic imaging results
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Core Research
The patient care journey from initial diagnosis, to treatment, and ultimately remission or recursion is a uniquely individual experience that involves many different touchpoints, emotional oscillations, and behavioral changes. This vast space is ripe for patient-facing innovation, so in order to hone in on the most appropriate point for intervention we chose to explore qualitative research methods to better understand the people we were serving and how we might most effectively bridge the knowledge gap.
Research Goals
Patient
HCP
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3
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Understand the brain tumor patient care journey from a high-level perspective, identifying areas for intervention and/or pain point mitigation.
Understand the patient's perspective and how their behavior might change over the course of the care journey, regarding results comprehension, relationships with HCP and family, and personal empowerment.
Understand the HCP-perspective on the care journey in general, and more specifically in the delivery of diagnostic imaging results.
Identify impromptu (or otherwise non-standard) strategies used by the HCP to improve patient understanding of diagnosis and imaging results
Support Groups
Overview
Discoveries
To form lasting participant relationships, we regularly attended weekly online support groups for those suffering from a brain tumor
*Note: all images shown are representative, and not actual patient data.
To form lasting participant relationships, we regularly attended weekly online support groups for those suffering from a brain tumor
*Note: all images shown are representative, and not actual patient data.
Market Analysis and Existing Literature
Overview
Discoveries
We reviewed existing literature on diagnostic imaging, the methods and innovations in the area, and patient-HCP relationships during these moments to help us form a foundation for improving the matter.
Semi-Structured Interviews
Overview
Discoveries
Purpose
Semi-structured interviews were conducted in order to generate rich data related to the individual BT patient experience.
Methodology
5 patient and 1 HCP participants took part in a 1-hour virtual interview. One team member moderated the interview while another generated a high-level experience map in the background.

The final 10 minutes of the interview were reserved for validating the experience map with the participant, focusing on the various touchpoints and emotional / behavioral changes they experienced throughout their care journey.
Empowerment Over Time
Per the mapping, it's clear that the most negative emotions are generally experienced in the stages immediately following initial diagnosis. This is likely due to the deluge of new information, and the immediate inability to perform IADLs following surgery.

Interview participants indicated that as time went on they felt more in control of their care journey, resulting in reduced anxiety and less negative emotions. By pairing the patient's emotions with key moments, we revealed trends that correlated with this sense of improved personal empowerment.
Mapping the Brain Tumor Patient Experience
Overview
Discoveries
Extrapolating Themes
Affinity modeling helped to organize and make sense of the mountains of qualitative data generated from the core research. Themes were generally related to the four categories of: patient communication with HCP, accessibility of medical records, understanding of imaging results, and how patients cope with their condition.
Core Themes
Post initial diagnosis
At the institutional level
Ongoing
  1. Patients need a calibrated level of information: just enough to quell anxiety but not so much they become overwhelmed
  2. Patients are most concerned with treatment options and longterm effects
  3. There may be a forced reliance on one's medical team due to the deluge of new information
  1. Access to medical records is inconsistent and dependent on location of care
  2. The need for specialized care can lead to a fragmentation in care delivery and resources
  3. Shared and informed medical decision making increase patient sense of control and reduces anxiety
  1. Patients are typically unable to understand images as radiologists would but the images hold emotional importance
  2. The involved nature of dealing with a brain tumor often leads to establishment of workarounds or coping with the situation as is
  3. The necessity of an advocate is pronounced during ongoing treatment and in the event of treatment-induced conditions
  4. Cognitive decline and other pre-existing conditions erode patient ability cope with their condition
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Narrowing the Scope
Initial research quickly revealed that real impact on the patient experience requires a more comprehensive solution that touches on the complexities of the care journey. The potential for intervention was seemingly limitless, however, in order to avoid scope creep and maximize the impact a potential product would have on the patient, we limited the scope of the project.
An opportunity exists to ease the patient burden after the initial diagnosis
Generally speaking, the new deluge of information paired with the immediate inability to perform IADLs contributes to a sharp decline in the patient's well-being following the initial diagnosis and treatment. As time goes on, many of these issues are largely mitigated by personal research and external advocacy.
Target Population
Overview
Demographics
Implications
Selected Needs Statements
Needs center generally around the categories of communication with HCP and broader healthcare team, access to personal healthcare data (e.g. diagnostic imaging and results), comprehension of results and condition, and coping with the condition.
Selected Needs Statements
Needs center generally around the categories of communication with HCP and broader healthcare team, access to personal healthcare data (e.g. diagnostic imaging and results), comprehension of results and condition, and coping with the condition.
How might we
Increase patient understanding and involvement in the decision-making process regarding treatment options?
Initial User Needs
Selected User Needs
All User needs
Selected needs statements
Needs center generally around the categories of communication with HCP and broader healthcare team, access to personal healthcare data (e.g. diagnostic imaging and results), comprehension of results and condition, and coping with the condition.

Selected needs were prioritized on the basis of how well they appealed to the goal of empowering the patient by providing more control in the decision-making processes related to treatment options.
  1. A way to keep track of what my doctor is telling me during our conversations.
  2. Rapport with my doctor and broader healthcare team.
  3. Reduced medical jargon in favor of language that is more familiar to me.
  4. The right balance of information about my condition and treatment options, so that I am neither overwhelmed nor left wondering.
  5. A way to better understand the potential consequences or side effects of my condition, the treatment options, and what is involved in surgery.
  6. References that put certain aspects of my results or condition, like the size of the tumor and where it's located, in a way that I am familiar with.
  7. A way to store, share, and access my healthcare data and results.
  8. A way to connect all of the information, prognoses, and/or options that my various doctors and healthcare teams provide me.
  9. Accommodation for my cognitive (e.g. literacy impairment) and/or sensory (e.g. vision or hearing trouble) that results from my condition or treatment.
  10. To advocate, or have an advocate, to help me make decisions that are in my best interest.
Selected Needs Statements
Needs center generally around the categories of communication with HCP and broader healthcare team, access to personal healthcare data (e.g. diagnostic imaging and results), comprehension of results and condition, and coping with the condition.
Next steps:

We are preparing a moderated group discussion to better hone in on the
target area of improving patient agency and understanding of treatment options
and subsequent decision-making.

Stay tuned!
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