Cancer survivors spoke about the existing cracks in the healthcare system when it comes to patient education and access in a panel at DPE 2023 on Tuesday.
Despite an industry-wide push to embrace diversity, equity and inclusion and address racial and ethnic health disparities in recent years, patients on the ground are often still facing large gaps in access, equitable care and education.
At the panel, cancer survivor and former news anchor Loriana Hernández-Aldama and cancer survivor Jonny Imerman discussed their own personal experiences facing those gaps during their treatment journeys.
They touched on a variety of issues — from the lack of equitable care across different types of cancer, to a lack of seamless communication between HCPs and missing mental health support — and pointed out that cancer patients often have to find ways to fill in those “cracks in the system” themselves.
“I never met a young adult survivor like me during treatment and that’s what I wanted most,” Imerman said during the panel. “I didn’t know anyone like me. There were lots of patients lying in rooms all day alone — we had so much in common and should [have been] sharing our experiences.”
After being treated for advanced testicular cancer, Imerman decided to launch ImermanAngels.org, a cancer support nonprofit that introduces cancer patients to others with the same type of disease, some of whom are already in remission and living a healthy life.
“We started coming in on Saturdays, or Tuesdays after work, giving pump-ups to people,” Imerman said. “Especially the [patients] who were alone — they were so excited to talk to someone.”
Indeed, feelings of confusion, stress and lacking support still permeate throughout the patient experience, according to the recent 2023 PatientPoint Patient Confidence index. That survey found that 48% of respondents felt anxious before a doctor’s appointment, representing a 10% increase from the year prior.
In addition, 48% of respondents this year said they don’t have enough information to prepare for a doctor’s appointment, compared to 38% in 2022. Forty percent of people said they avoided going to the doctor due to anxiety, while 39% said they avoided due to fear of bad news or diagnosis.
The goal of the survey was to help understand what will motivate patients to seek empowerment and information, said Linda Ruschau, PatientPoint’s chief client officer.
“Even though there’s tons of information out there, 57% of people left their doctor’s office feeling confused and 67% wish they had better ways to describe their conditions,” Ruschau said.
Hernández-Aldama illustrated the issue from a financial perspective as well. Despite the pharma industry investing in cutting-edge treatments and new therapies, many patients — especially those in more marginalized communities — either lack access to them or face serious financial difficulties.
In addition, certain types of cancers like breast cancer tend to see more investment than other types of cancer, some of which may impact Black or Latino communities more.
After being diagnosed with acute myeloid leukemia (AML), Hernández-Aldama couldn’t afford to fly her son to visit her when she was living at Johns Hopkins for a year for treatment.
“We had incredible medical care — yet we were about to lose our house, and had no support,” Hernández-Aldama said. “Then, I walked across the street to the breast cancer building – it was like leaving a pop-up carnival and entering Disney. I was like, ‘We’re dying over here across the street too.’ We need equity across all cancers.”
The diversity problem in point-of-care marketing isn’t new. PatientPoint launched a new tool dubbed Audience Builder this summer that aims to address that lack of diversity — by using medical claims data to track down locations and patient populations that fit a specific demographic.
The goal is to help marketers reach more diverse populations based on age, race, gender and household income.
Still, the panelists also called on healthcare marketers to focus on the patient just as much as the healthcare professionals.
“It’s not just about the [HCPs],” Ruschau said. “[Healthcare marketers] have to keep it patient-centric. We have an opportunity and a responsibility to reach every possible patient.”
“The science is not enough,” Hernández-Aldama added. “We have to humanize healthcare. You can make great research and great medicine, but if you’re not supporting the whole patient — you’re not supporting us at all.”