Listen to their stories. For biopharma companies aiming to connect with patients and caregivers, therein lies the secret to meaningful engagement.
This was the takeaway from a special live episode of the company’s Living With podcast, in which Health Union’s community strategist and storyteller Emily Downward and COO Lauren Lawhon, together with Alisha Bridges, a psoriasis patient advocate and one of Health Union’s 300-plus contributors, discussed how important it is for pharma marketers to understand what it’s like to live with a chronic condition.
Downward, who moderated the discussion that took place at the Digital Pharma East conference in September, said that patient data is of most value when integrated with daily social interaction. She added that involving the consumer in treatment decisions and taking the time to see how chronic conditions impact a person’s daily life allows pharmaceutical companies to create meaningful engagement at all points in the patient journey.
Bridges, who has been living with plaque psoriasis for the past 25 years and has written numerous blogs and articles for plaquepsoriasis.com and psoriatic-arthritis.com, said that her involvement in chronic illness advocacy has allowed her to play an active role in her own patient journey.
“My doctor considers me kind of a ‘super patient,’” she shared. “Because I’m so involved in psoriasis research, I’m sometimes the first to know about the latest treatments and what’s coming down the pipeline, and between my research and then hearing the experiences of others in the community, I’m able to bring that information with me to my doctor.”
Lawhon said Health Union has identified a surge in the number of patients who are more proactive in making treatment decisions, whether by educating themselves through online resources or because they’re taking the time to discuss options with their families, their doctors or other patients.
“We did a meta-analysis of the 32,000 respondents from our ‘In America’ patient surveys last year, across all our conditions,” she reported. “More than two-thirds said they play an active role in their treatment decisions, with almost half of them going online to seek information and read about other patients’ experiences.”
Most of the people visiting Health Union’s online communities are looking for emotional support or solidarity, Lawhon stated, or for a way to validate their experience. Often in pharma, she noted, only the physical symptoms of a disease are addressed, such as itching or flaking in the case of psoriasis, and the emotional impact is often ignored.
“In the ‘In America’ surveys we conducted, we asked people to describe a flare or exacerbation in their own words, and much of the time it’s not about the physical symptoms,” she said. “It’s often about feeling fatigued and the emotional impact that has on someone’s life and how they feel about themselves.”
Bridges agreed, noting the emotional toll that psoriasis has on patients is not something often discussed, and that as a child she often felt isolated and depressed.
“Psoriasis affected how I viewed myself as a person,” she shared. “It affected my self-esteem, my self-confidence and my mental health in general. It created a fear, or a constant nervous feeling at the thought of someone seeing my skin and what they might think or say when they did.”
Bridges recalled a mortifying incident from her childhood. She was in high school and appearing in a school play. The drama teacher distributed makeup for the students to use as they prepared for the performance. But when the makeup was passed to Bridges, she remembered, the teacher grabbed it away, saying, “No, you can’t use this, I have no idea what’s all over your skin,” humiliating her in front of the class.
Incidents like this one, Bridges said, caused childhood anxiety, panic attacks and irritability, often mislabeled in her case as having a “bad attitude.”
Bridges also shared the memory of another childhood trauma, when she participated in a high school beauty pageant covered with patches of psoriasis over 90% of her body.
It wasn’t until she went clothes shopping with her family that the implications of standing on stage in a sleeveless gown truly sunk in.
“I remember just breaking down in the dressing room,” she recalled. “My hands were sweaty, my heart was racing and when we got home I said, ‘I’m quitting the pageant, I’m not doing this.’”
But when Bridges’ grandmother convinced her to stick it out, and offered to help cover the patches with makeup, she persevered.
“The crazy part is I ended up winning,” Bridges laughed. “But I almost let my psoriasis make the decision for me. It still makes me sad when I think back to all the opportunities I missed out on or almost missed out on due to the fears and insecurities that come with living with a visible disease.”
Lawhon, who applauded Bridges for her candor, said that when patient advocates such as Bridges agree to share their personal stories, her team ensures that contributors feel secure discussing their experiences. These honest accounts are vital sources of support and education for fellow patients, she explained.
She noted that Health Union’s research has found that depression, anxiety and fear are a common thread in all chronic condition communities. The findings prompted Health Union to conduct a cross-community survey that examined the relationship between chronic physical conditions and mental health conditions.
Of the 3,275 people surveyed, 90% of them indicated they feel some negative impact on emotional or mental health as a result of their chronic physical condition, with more than a quarter of respondents noting an extreme negative impact and two-thirds of people being co-diagnosed with depression, stress or anxiety.
“The data showed us that it’s really key to recognize that these conditions are more than just physical symptoms,” Lawhon said. “The devastating emotional impact and some of the mental health conditions often go hand in hand with those symptoms.”
Bridges said she hopes pharmaceutical companies will take note of these findings and involve patients in panels or marketing discussions. She said that she believes this approach would help guarantee that brands are focusing on what is truly important for patients with the condition.
She noted that making marketing teams and campaigns more diverse would be a step in the right direction.
“When you think about the marketing for psoriasis, you think Caucasian people with red, inflamed patches, right?” she prompted the audience. “Many people, my friends and family included, have the misconception that African-Americans don’t get psoriasis, because they don’t see me when they look at these commercials or pamphlets. My psoriasis doesn’t look like that — it’s never been red, it’s more of a dark purple or brown.”
Bridges said this disconnect can impact the patient-physician relationship, claiming that she was misdiagnosed for years due to the fact her psoriasis outbreaks did not look like those in medical textbooks.
She also noted that even her treatment options were out of touch, recalling a specific shampoo she was prescribed for scalp psoriasis.
“As a black woman, I don’t wash my hair every 2 to 3 days, but that’s what the treatment called for,” she said. “So what that leads to is a lack of compliance. First you have adherence issues, and then you no longer have an effective treatment.”
This disconnect is why Lawhon noted, patients rely on online communities for support, and why taking the time to listen to what they have to say would be extremely beneficial for pharma companies.
“Our purpose within each and every one of these communities is to bring people together through shared experiences of life with these conditions,” she said. “We know now, thanks to stories like Alisha’s (Bridges) and the data we’ve collected, that when people feel supported and informed, they make better healthcare decisions. By creating environments where people can get the information they need, we allow patients to make better decisions in real time, and allow our pharma partners to better understand the needs of patients, ultimately leading to better health outcomes.”