Centralized solutions help align drug development teams, providers, and patients

Rare diseases: Unifying data and using predictive analytics to overcome barriers

Centralized systems and information can also play a vital role in supporting or even shortening the diagnostic journey for patients in certain disease settings, Lu explained, citing rare disease oncology as one such area in which the patient population is smaller, so unmet needs tend to be higher.

AI-generated or predictive models that draw from aggregated health records and other centralized or shared information can help overcome barriers to support:

• Development of diagnostic tools to help physicians.
• Identification of patients with rare diseases for trials.
• Recognition of early disease markers to help accelerate diagnosis.
• Management of drug adverse effect profiles.
• Identification of knowledge gaps to help inform the creation of training materials.

“Especially with progressive diseases that have irreversible damage, if we can diagnose people earlier, we can potentially greatly improve outcomes,” Vandervelde said. “There's a lot of data that's out there, but there are certainly a lot of barriers, too, because a lot of it is hard to interpret. There aren't standardized formats. There are concerns about bias from certain algorithms. But I think that there are increasingly more strategies that are being put in place to standardize the ways that we use these technologies.”

Conboy noted that, many times in the diagnostic process, the HCP who is the first point of contact with a rare disease patient might not know enough about that specific disease to identify it. “It's important to have centralized platforms that provide education for all levels, regardless of their background and specialties, to help them identify those diseases and then the appropriate treatments as well.”

Even with that education available, “we see a little bit of a hesitancy to prescribe some of these new medications, because there might be some concern about adverse effects with these complex therapies,” Conboy continued. Centralized access to clinical intelligence and drug information that aligns with educational materials helps provide “professional backing to those providers and helps them promote confidence in making some of those decisions on how to treat their patients in those populations.”

Collaboration between medical affairs and market access teams

To best serve patients, Londhe said, all teams within a life sciences organization need to work together, “like a well-oiled machine.” She sees a key component of that as alignment between medical affairs and market access. Sharing competitive intelligence and evidence-based studies is essential for both teams to “understand what barriers exist in utilization of a certain drug or a product and what can we do to alleviate some of the barriers.”

In Conboy’s work with Wolters Kluwer, she has helped develop tools and content to support life sciences organizations as part of the UpToDate® and Medi-Span® solutions suites. By providing all teams unified access to the latest evidence-based drug information and clinical recommendations, “it allows medical affairs and market access teams to evaluate drugs and the comparators to those drugs, the safety and efficacy profile of those drugs, from one single source of truth,” she explained. “They're not going to a bunch of different places that have conflicting data to get the information that they need. [That helps] them to then evaluate any gaps and opportunities that they have in order to promote new treatments or new therapies in the market.”

In addition to identifying gaps in the patient journey and the provider journey with a particular therapy, Vandervelde also stressed the importance of centralized drug and clinical information solutions to address gaps in the payer journey, including identifying additional evidence necessary to support phase-four studies and product launches.

Focusing on education and outreach – to both providers and patients

Vandervelde noted that approximately 50% of providers in the US are community-based, according to AMA benchmark surveys in recent years. That means they're not at academic centers and are less likely to have the time or opportunity to go to conferences to learn about drug advancements.

“They're inundated, and we need to be able to reach them where they're learning,” she said, whether that means integrating more digital medical education programs or strengthening life sciences outreach programs to providers.

Lu added, “in the current landscape, the biggest gap stems not from the lack of information, but the sheer amount of it,” which is why providing “relevant and contextualized information” for HCPs is important. By aligning life sciences programming with information they use in practice, it helps maintain consistency and reduce confusion.

When it comes to creating educational components for patients, what’s often sorely lacking is the patient perspective and a patient-first approach, said Londhe. It’s one thing to understand the practicalities of a drug’s administration, she explained. It’s another to combine evidence with patient-focused studies and empathy to understand the life-altering effects of a drug’s side effects on someone already struggling with the symptoms of a condition like a rare cancer.

“There are many ways you can incorporate the patient voice into the drug development process,” said Lu, including:

• Incorporating patient-reported outcome measures into clinical trials.
• Holding patient advisory boards.
• Seeking patient feedback on clinical trial design.

Obtaining this information is only the first step, she said. Having centralized data solutions helps organizations share patient feedback between teams, identify data gaps that might accelerate regulatory timelines, and provide visibility to the needs being addressed by research and the drug development timeline.

Vandervelde added, “I think it's really important for pharma companies to reach out to patients early on in the drug development process, as they're designing these clinical trials, to figure out what endpoints should they be looking at to measure real change in people's lives. And from a medical communications perspective, there's increasing awareness about making the clinical data available and accessible to patients through lay summaries to ensure that patients truly are informed.”

Both patient and provider outreach should be created to meet its intended user at their level, and it should be accessible to them with as few barriers as possible.

It all comes back to centralized solutions – like the UpToDate for Life Sciences suite, Medi-Span, and Medi-Span® Price Rx® – that provide aligned clinical intelligence, drug pricing analysis, and drug information. They “can actually streamline that internal communication and reduce that variation across departments,” Conboy said. “Having something like that as a starting point could be impactful for organizations and give them that strong foundation that they need to be able to align their internal experts.”

To learn more, watch the full webinar, “From Centralized Content to Personalized Engagement: Delivering Consistent, Insightful Messaging Across Patients and Providers.”