Today, representatives from WEGO Health, Janssen US, HealthPrize, and The Great BowelMovement participated in a panel discussion to talk about the issues related to patient listening and engagement- how to capture patient voice, improve medication adherence, and work with online patient communities and activists.
The consensus among the panelists and participants was that patients need to be given the opportunity to define themselves- their needs, preferences, emotional state, and barriers in order for pharma to understand what role it can play within patient communities. As Todd Kolm from WEGO Health put it, “You won’t know if you don’t ask.”
Pharma Engagement with the Inflammatory Bowel Disease Community
In order to effectively support patients, Jennifer Thomas of Janssen US said that pharmaceutical companies and others must listen to the needs of the community, look deep to find hidden truths, and lead patients to credible information.
Over the past several years, Janssen has taken great strides to engage with patients. “We did a lot of listening to patients around the time that the FDA released its guidance on social media,” Thomas said.
Working with Crohn’s disease and ulcerative colitis patients, Janssen found a really passionate group of people. “That’s where we started to really uncover what their needs are [in order to] hopefully engage with and bring value to them,” Thomas said.
Through it’s listening, Janssen uncovered themes within online discussions among IBD patients- treatments, daily living, and more. They also discovered a lot of confusion among patients, bad advice, and frustration.
“[We learned that] branded marketing messages were not the way that we were going to move the needle for the IBD patient community,” Thomas said.
Janssen developed a panel of Crohn’s disease and ulcerative colitis activists to uncover online needs and perceptions in order to help shape key messaging and materials.
Thomas offered a piece of advice for other pharmaceutical companies preparing to embark on similar listening ventures. “Be ready to hear honest and real feedback, incorporate suggested changes, and to fall in love with the patient community. It’s a powerful way to bring what you do to life.”
Engaging Patients to Improve Medication Adherence
A neurosurgeon by training and former practice, Dr. Katrina Firlik of HealthPrize is looking at human psychology to understand what makes people take or not take medication.
Dr. Firlik embarked on research into medication adherence and non-adherence based around some sobering statistics:
- In the United States, medication non-adherence accounts for $290 billion spent in otherwise avoidable medical costs
- 25 percent of new prescriptions are never filled
- 50 percent of new patients quit refilling their scripts within 12 months
For years, medication non-adherence was attributed to either high costs or patient forgetfulness. However, a study in the New England Journal of Medicine yielded other reasons that patients did not take their medication:
“I’ve never been a pill person.”
“I don’t believe in them.”
“If there is a lawsuit out there about side effects, I’m not taking it.”
“I don’t like taking medication, period.”
“I’m old-fashioned. I don’t take medicine for anything.”
Looking at similar studies, Dr. Firlik and her team at HealthPrize concluded that providers and pharmaceutical companies need to find a way to make the medication taking process more positive. HealthPrize created short-term rewards, which yielded high engagement rates because of the instant gratification patients receive.
Rewards aren’t the end all be all for medication adherence. Dr. Firlik said that the benefits of taking medication need to be better communicated. “[Being on] medication can impose a sick identity antithetical to how a patient feels,” she said. “A positive metaphor or visual can help express a medication’s benefit. We need to leverage the power of personal testimony and videos.”
The negatives of non-adherence also need to be communicated more effectively. Dr. Firlik suggested that virtual reality could be used to show patients the impact of taking medication to manage an illness versus not taking the medication. This would provide patients with a realistic look at their illness and make better decisions about their treatment plan.
Patient Perspective on Engagement
Andrea Meyer grew up in a highly regimented family- everything was planned out. But in 2001, her life was flung into inconsistency. The co-founder of the Great Bowel Movement said she went through months of debilitating pain, weight loss and hair loss.
“College is when it came to a head,” Meyer said. “After my 21st trip to the bathroom in a 24 hour period, I decided I was done with loss. I needed to know what was wrong. I wanted to gain things again- knowledge and hope- and I wanted a plan.”
Meyer was diagnosed with Crohn’s disease and about seven years ago, had surgery to remove part of her intestines. Once she was recovered and healthy, she decided she needed to do something useful and set forth on her path to becoming an advocate.
“When you’re chronically ill, you have to learn how to be a patient for the rest of your life,” Meyer said. “You can’t see a finish line.”
She said patient engagement is key to giving chronically ill patients some sense of control back into their lives. “When someone is first diagnosed [with a chronic illness], there is a sense of being victimized. Asking someone to be engaged gives him or her a piece of control back. That’s huge,” she said. “Patients are like horses- they are going to spook easily and will respond best to repetition and consistency. Once you reach out to them, they are going to look to you to lead the way.”
For pharmaceutical companies and others looking to build relationships with an online patient community, Meyer says that authenticity is important. “Nothing spreads faster than genuine reliable content.”
So what do patients want from pharmaceutical companies? According to Meyer, “complimentary services and information that go hand-in-hand with drugs and procedures. Patients are big sponges. If the information is there (and it should be), we are going to take advantage of that.”
Additionally, she cautioned pharma to maintain a presence once they begin engaging. “We want to know we’re headed somewhere together- don’t just survey the community and disappear,” Meyer said. “We want to know where everything is going.”
While a social media presence is a must, Meyer ended by cautioning pharma from trying to do too much. “Don’t be a diner,” she said. “You don’t have to do everything. Pick a couple of things and do them well; don’t do everything mediocre. It will pay off leaps and bounds.”
Rebecca Kaplan is a communications consultant, freelance writer, and blogger. You can read more about her life loving someone with Crohn's disease on her blog, on Huffington Post, or follow her on Twitter.