Regarding Cancer

Increasing participation in peer-to-peer cancer support

OVERVIEW

Regarding Cancer is a non-profit organization that provides support programs for those impacted by the disease in Central Texas. Their primary service is a peer-to-peer support program, through which a current cancer patient or caregiver (Care Receiver) is matched with previous cancer patient or caregiver (Volunteer) based on criteria like age, gender, cancer type, and cancer stage.

The Regarding Cancer team came to me with the goal of redesigning their website to better fit the needs of its users. I completed phase I of the project (research and analysis), and proposed a phase II (design and evaluation) in a comprehensive report. The project will be handed off to a designer next semester.

This project served as my Capstone (Professional Experience Project), the culmination of my graduate degree at the University of Texas at Austin School of Information.

TEAM

Erin Finley - UX Researcher

Eric Nordquist - Project Manager

COURSE

Professional Experience Project

CLIENT

Regarding Cancer

DURATION

January 2019 - May 2019

Problem

How can Regarding Cancer increase participation?

It is projected that more than 1.7 million new cancer diagnoses will be made in the United Stated in 2019. Cancer is a devastating diagnosis, and can create psychological, social, emotional, and financial problems. In an ideal world, providers would have more time to spend with their patients addressing their questions and anxieties - but this ideal is rarely a reality in the U.S. healthcare system. Volunteers are becoming more important in supporting patients and their caregivers, and research shows that peer-to-peer healthcare is a promising supplement to medical care. So why do patients and caregivers not know how, where, or why to seek psychological support during their cancer journey?

Process

Client Kickoff

The client kickoff provided an opportunity for Eric and I to meet with two members of the Regarding Cancer team, Diana Dobson (Executive Director) and Linda Richards (Program Director). Diana and Linda provided us with a history of the company, described how the program works, and outlined their overall goals for the website redesign. This was helpful in understanding the project background and ensuring we were on the same page.

Key Takeaways

The website is currently not optimized for mobile.
The program is unique because it serves all types of cancer, versus a specific type.
They are inspired by other cancer support programs (e.g. Imerman Angels).
The tendency to seek help depends on multiple factors such as age, gender, cancer type, cancer stage, etc.
There are four perspectives to consider: 1) Patient Care Receivers, 2) Caregiver Care Receivers, 3) Patient Volunteers, and 4) Caregiver Volunteers.

The website is currently not optimized for mobile.
The program is unique because it serves all types of cancer.
They are inspired by other cancer support programs (e.g. Imerman Angels).
There are four perspectives to consider 1) Care Receivers who are patients, 2) Care Receivers who are caregivers, 3) Volunteers who were patients, and 4) Volunteers who were caregivers.
The tendency to seek help depends on multiple factors such as age, gender, cancer type, cancer stage, etc.

The website is currently not optimized for mobile.
The program is unique because it serves all types of cancer.
They are inspired by other cancer support programs (e.g. Imerman Angels).
There are four perspectives to consider 1) Care Receivers who are patients, 2) Care Receivers who are caregivers, 3) Volunteers who were patients, and 4) Volunteers who were caregivers.
The tendency to seek help depends on multiple factors such as age, gender, cancer type, cancer stage, etc.

Research

I started the research phase with a literature review, a competitive analysis, and a heuristic evaluation. All three helped to inform the rest of my research, which included user interviews and a user survey.

Literature Review

I conducted a literature review in order to gain a better understanding of peer-to-peer healthcare, especially in the context of cancer. I surveyed available literature, both academic and non-academic, and chose 5 relevant pieces to thoroughly investigate, summarize, and draw key takeaways from. I organized the key takeaways into 4 categories: 1) Problem, 2) Solution, 3) Positives, and 4) Negatives. An example from each category is listed below.

Heuristic Evaluation

I completed a heuristic evaluation in order to identify clear problems that should be fixed in the website redesign. I assessed the current website using Neilson’s 10 Usability Heuristics and identified issues present across the website as well as stand alone problems. I compared these findings to other websites during the competitive analysis phase. Some examples are included below.

... and many more

Competitive Analysis

I evaluated the websites of 4 direct competitors and 4 indirect competitors in order to learn from companies in the peer-to-peer cancer care space as well as companies in different industries with similar models. I determined the strengths and weaknesses across them and drew key takeaways from the findings to inform the rest of my research.

Direct Competitive Analysis

Indirect Competitive Analysis

Design Recommendations

I combined my findings from the literature review, the heuristic evaluation, and the competitive analysis to analyze them. Then I drew 8 initial design recommendations and presented them to Diana and Linda during a status meeting.

User Interviews

I started the next phase of research by conducting qualitative user interviews, which was a learning experience. My goal was to understand the cancer care journey and the Regarding Cancer experience from multiple perspectives, but I would not necessarily have access to every type of participant; current Care Receivers were considered a vulnerable population.

Diana and Linda were confident they could recruit current Regarding Cancer Volunteers to participate, so I outlined a target population for them two weeks before I planned to start the interviews: 4 Volunteers (2 Patients and 2 Caregivers), ideally a mix of ages and genders.

Then I created (many versions of!) a semi-structured interview guide that could be tailored to both types of Volunteers. It included 5 sections: 1) Warm Up, 2) Cancer Care Overview, 3) Patient or Caregiver Journey, 4) Psychological Support, and 5) Volunteer Journey.

Recruiting participants proved to be more challenging than expected. Ultimately, I was able to conduct 2 one-hour user interviews, one in-person and one over Zoom video conferencing. This did not generate nearly enough qualitative data, so I decided to supplement the user interviews with a qualitative and quantitative survey. The interviews helped to get me on the right track and informed the survey questions. I grouped the interview data and the qualitative survey data into an in-depth analysis phase.

User Survey

My original intention for the survey was to gather quantitative data to back up the qualitative data found during the user interviews. Since I did not generate enough qualitative data during the user interviews - and I was not having success recruiting more participants - I decided to supplement the interviews by making the survey both quantitative and qualitative.

I created 2 surveys (one for patients and one for caregivers) in Qualtrics that included 5 sections: 1) Demographics, 2) Patient or Caregiver Journey, 3) Psychological Support, 4) Regarding Cancer - Care Receiver, and 5) Regarding Cancer - Volunteer. Depending on the logic, each participant was asked 20-28 questions. For example, not all current Volunteers were also Care Receivers, so they were not asked those questions.

Diana and Linda sent the surveys out to current Regarding Cancer Volunteers. I received 52 responses total (36 patient responses and 16 caregiver responses). I illustrated the quantitative data graphically and included the qualitative data with the user interview findings in the analysis phase.

Patient Survey Quantitative Data

Caregiver Survey Quantitative Data

Analysis

During the analysis phase I completed 2 affinity diagrams (one for patients and one for caregivers), 2 journey maps, and called out a list of design recommendations.

Affinity Diagrams

I completed two affinity diagrams, one for patients and one for caregivers. My goal was to uncover patterns across the qualitative data, prioritize themes, and determine next steps for further research and design. I included 12 participants in each affinity diagram. I chose which to include based on response length, gender, age range, and psychological support, with the goal of having a mixed sample given the respondent population.

Patient Affinity Diagram

For the patient affinity diagram, I included more female responses because they were generally more qualitative than the male responses. I created the most age-diverse sample size possible, considering many survey participants were 60 +. I included some patients who did not participate in psychological support during their cancer journey and some who did.

Iterative grouping and re-grouping resulted in 4 overarching categories: 1) Before Diagnosis, 2) Diagnosis and Treatment, 3) Psychological Care, and 4) After Treatment. I noted key themes within each of those categories.

Caregiver Affinity Diagram

For the caregiver affinity diagram, I again included more female responses because they were more in-depth than male responses. The respondents were even more overwhelmingly 60+, so I included most of the responses from other age groups. The majority did not participate in psychological support during their cancer journey, so I included most who did.

This time I ended up with 3 overarching categories: 1) Before Diagnosis and Diagnosis, 2) Treatment and Psychological Care, and 3) After Treatment. I noted key themes within each of those categories and highlighted the ones that stood out versus the patient affinity diagram.

Journey Maps

I used the themes uncovered in the affinity diagrams to create two journey maps (one for patients and one for caregivers). This helped me synthesize and visualize what patients and caregivers experience before, during, and after their cancer journey. I recorded their feelings, actions, and thoughts into comprehensive diagrams. Then, I called out key opportunities to design for, particularly in the “Treatment” and “After Treatment” phases.

Patient Journey Map

The patient cancer journey is a rollercoaster - the diagnosis is shocking, the options are overwhelming, the treatment is isolating, and the recovery is confusing. It is mentally and physically exhausting. Regarding Cancer wants to reach patients who do not know where, why, or how to seek psychological support.

Caregiver Journey Map

The caregiver cancer journey tends to be forgotten about. However, it can induce many of the same emotions. Many do not know that they too can (and should) seek psychological support.

Conclusion

This was an incredibly rewarding project, and I hope my research will make a difference in how cancer patients and caregivers are able to find and receive psychological support through the Regarding Cancer website.

Lessons Learned

Start recruiting for user interviews earlier in the project timeline.
Conduct qualitative research with current cancer patients and caregivers to gain their perspective. The interview and survey participants I had access to were all previous cancer patients and caregivers, so their memory of their cancer journey may have been skewed.
Interview the providers (nurses, social workers, etc.) who refer patients and caregivers to Regarding Cancer.