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Patient support programs have evolved from purely assisting with the financial aspects of treatment to covering patients’ entire healing journeys.
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In the last few years, it’s become clear that the one-size-fits-all patient support model is ineffective, particularly when it comes to specialty drugs. A deep understanding of patients’ needs helps organizations understand which services are necessary in different circumstances.
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As patient support programs improve, the next step is to meet different patients’ requirements around communication: Making information accessible without leaving patients feeling under-supported or overwhelmed.
Patient support programs used to focus solely on offering financial assistance. Jourdan Russo remembers those days well.
Jourdan’s first job in the industry involved data entry and call center work while she was still in college. The satisfaction of helping people access medication they needed turned this from a day job to a passion and a career for Jourdan.
After rising through the ranks at what became Conduit Health Partners, Jourdan switched to the manufacturer side. She’s now Director of Patient Services at Kyowa Kirin, a global specialty pharmaceutical company based in Japan.
Jourdan has seen patient support shift to a more holistic perspective, helping patients adhere to drug regimens and find resources throughout their treatment journeys.
She believes the rise in speciality drugs has contributed to this need to address more than the financial side of medical treatment. The industry’s evolution has proven that a one-size-fits-all model of patient support isn’t effective — and it has pushed hub services to adapt.
On a recent episode of the Specialty Patient Podcast, Jourdan explains the two key factors in building a successful patient support program, why different drugs demand different levels of support for patients, and improvements she hopes to see in the industry in future. (The views she expressed are her own and aren’t necessarily shared by her employer).
Patient support programs have evolved from a purely financial focus.
When Jourdan first started working in patient support, the service centered on assisting patients with the financial aspects of treatment. For example, helping patients find copay assistance programs that could lower the costs of their prescriptions, and helping uninsured patients find financial aid.
There were also some smaller hub services offering more tailored financial services, such as prior authorization support and benefits investigations.
Today, patient support has evolved beyond financial services into a more holistic approach. There’s more focus on the medical side, including understanding what patients need to help them follow the treatments they’re using.
“The trend now is around the adherence component of things, and supporting patients throughout their duration of therapy: Providing them with the resources and information they need to have a successful treatment journey,” Jourdan says.
Patient feedback is key to patient support.
In Jourdan’s experience, the two most important factors in planning a new patient support program are a long lead time and an understanding of patients’ experiences.
Ideally, patient support teams have 18 months to two years to start gathering data on the support services a specific drug will require. This is especially important in the case of rare diseases and specialty drugs, because so much of planning an effective program comes from understanding what patients need in great detail.
To that end, Jourdan begins with market research and patient surveys.
“It all starts with focusing on the patient and understanding what their journey has been, and how we anticipate their journey going on this product,” she says. “Identifying where there may be gaps in their understanding or knowledge, where we need to fill some of those needs.”
One size doesn’t fit all.
As the number of specialty drugs has increased, it’s become clear that the one-size-fits-all approach to patient support that has long been the industry norm is not meeting patients’ needs.
“When you’re talking about rare diseases, you really need to understand the specific patient need,” Jourdan says. “It’s unique to the brand, to the way the product is administered, to how often the treatment is supposed to be taken, to what your market access landscape is going to look like.”
That doesn’t necessarily mean starting from scratch with every new drug or brand. Instead, Jourdan says that patient support leaders at each pharmaceutical company should put together a portfolio of patient support services, which they can cherry-pick for each new product.
“There are specific requirements that make sense for some products and not others. … There are some drugs where [patient support] is totally necessary, and there are some products where it’s almost seen as more burdensome than anything else,” Jourdan says.
Hubs are no longer the hub of all patient support.
Traditionally, hubs have acted as the middlemen between manufacturers and patients. That included managing patient support, particularly around adherence to drug regimens and the treatment journey.
However, Jourdan says that manufacturers are starting to take a more direct interest in patients’ experiences, particularly around specialty drugs. A manufacturer has more incentive than a hub to make sure patients are having good experiences with its products, and to get feedback that can help it improve.
“There’s that [higher] level of commitment to the company, the patient and the products when you do it internally,” Jourdan says. “[It would be great] If there was a vendor that could shake the crystal ball and get it 100% right, and have that same commitment, passion and dedication.”
Although outsourcing patient support to hubs is still the default, Jourdan believes that as manufacturers increasingly put together internal specialty programs, hubs will be forced to diversify their offerings.
The future of patient support: custom communication and less complication.
Different drugs require different levels of patient support. And different patients using the same drugs want different levels of interaction with a patient support program.
For example, Jourdan says, some patients appreciate having a dedicated case manager who texts them regularly to check in, whereas others prefer the occasional email, and others don’t want any communication. At the same time, it’s important that everyone gets all the information they need.
Jourdan hopes that patient support programs are moving towards a future where it will be possible to tailor communication to individual patients’ preferences, so that people feel able to process the information at a rate that works for them.
“It’s not just about how we communicate, it’s also about what we are communicating, and at what point in your journey,” she says. “Are we communicating so that you’re overwhelmed and scared off? Or are we being overbearing, providing too much information so you just find us annoying? There’s a balance.”
Ideally, patients should have a more streamlined experience, which would also help reduce their anxiety. Jourdan empathizes, knowing that one prescription can lead to five different phone calls in the first three days alone. “It’s all about making it simpler for patients and simpler for us to execute on,” she says.
Even when she’s getting into the weeds on budget planning or sitting in meetings, Jourdan tries to hold on to that empathy for the patient.
“The key is, don’t lose sight of those people that are on the other end of the phone, who are struggling to get medication and to stay alive, potentially,” she says.
This article is based on an episode of HelpAround’s Specialty Patient Podcast. Subscribe to ensure you get new insights about the specialty drug ecosystem and hear from professionals who are striving to make specialty patients’ lives easier.