Rewriting the Oncology Patient’s Journey with Real-World Data

November 30, 2021

Improved collaboration and communication between patients, industry, and clinicians will be key for smoothing out the bumps in an oncology patient’s journey, said a panel of life science leaders in a recent COTA webinar.

Every journey begins with a single step. For new or relapsed oncology patients, that step often takes them into a dizzying maze filled with intensive treatments and uncertain outcomes.  

Life science stakeholders are committed to making the path to positive outcomes less frightening and convoluted for patients. With breakthrough treatments and innovative therapies targeted to the toughest of cancers, the industry has made significant progress with guiding patients toward longer, healthier lives.

But there remains much more to be done to adequately support patients throughout their travels, said a group of experts in a recent webinar hosted by COTA. Stakeholders can begin by understanding the role of real-world data in medical research and applying this knowledge to enhance clinical trials.

“If we consider that we’ve been driving a car on the journey to better outcomes, we’ve really only been looking through the rearview mirror thus far. Most of the data that we use is historical in nature,” said moderator Paul Simms, Chief Executive at Impatient Health.  

“To be good drivers, we have to be able to see what’s ahead of us. We can’t rely on siloed data and historical data on the individual patient level or the macro level. There are new techniques and new ways of integrating disparate data sources, including genomic data and real-world evidence, to give us a better idea of where we should be steering.”

Integrating these innovative methodologies into clinical trials and oncology treatment protocols is a top priority for life science stakeholders, but it won’t be an easy process. Competing priorities, insufficient data sharing, poor data quality, and a lack of communication are common across the industry.

These challenges are so pervasive that two-thirds of webinar participants said patients, industry, regulators and payers are at least somewhat disconnected in the current oncology environment. The remaining one-third believe the disconnection is complete, resulting in enormous misalignment across the board.

“Part of the problem is that the data we can currently access is insufficient,” stressed Dr. Mitchell Smith, Chief Medical Officer of The Follicular Lymphoma Foundation. “If it’s very good data, it will give us an idea of what has been done. But it doesn’t always tell us what can be done and how it should be done. We have an opportunity to come together and think about where we want to be five years from now so that we’re not repeating the same complaints that we have right now.”

Collaboration between stakeholders, combined with an emphasis on patient diversity and the integration of RWD into clinical trial design, will be key for launching the industry into a brighter future, explained the panelists.

“We need to increase enrollment – but we have to do it the right way,” said Najat Khan, Chief Data Science Officer and Global Head of Strategy & Ops at Janssen R&D. “We have to make sure we are using real-world data that is as big as possible, as robust and generalizable as possible, from as many different patient types as possible, so that we can trust the data reflects actual populations.”

Christi Shaw, CEO of Kita Pharma, agreed that insufficient diversity and unintentional bias in patient enrollment can have a profound impact on research results.

“We know that patients with the same disease will often respond differently to the same therapy,” she said. “The problem is that when we focus all our recruitment efforts on specific geographical areas or provider types, we’re missing out on connecting with so many patients who could benefit. We have to be more proactive with seeking out patients who are a good fit for trials and helping to educate them – and their providers – about participation.”

Healthcare providers, and the clinical data they collect and disseminate, are the crucial link between patients and the life science industry. Electronic medical records (EMRs) have helped to digitize previously inaccessible data assets, but all the panelists ruefully agreed that EMRs have a long way to go before they live up to their promises.

“EMRs were designed to be transactional, not to answer questions around the patient’s journey,” said CK Wang, Chief Medical Officer at COTA. “But there’s a lot of valuable information in clinical documentation if we know how to find it. There’s information about patient staging, responses to treatments – there’s sometimes even information from biomarker and genomic testing in clinical data.” 

Creating more standardized clinical documentation and investing in better ways to extract and synthesize data from disparate sources can provide a more complete view of the patient’s treatment journey, Wang added. 

“We here at COTA firmly believe that combining full genomic testing with a patient’s complete clinical profile will provide a more in-depth and well-rounded view of a patient’s cancer situation.  It’s our hope that combining these two datasets will lead to novel disease insights that will drive forward drug research and ultimately improve patient care,” he said.

Life science stakeholders can play an active role in charting the way forward by taking a leadership role and sharing their thoughts on real-world data and research literacy with a new generation of clinicians, said Khan.

“Not every clinician needs to be able to go out and code an algorithm, but they need an appreciation of what can be done,” she said. “As these fields are progressing, it only takes one bad example for things to regress. It’s really important to be proactive with educating our partners and guiding the evolution of real-world data so that we’re all on the same page and working toward the ultimate goal of better care for patients.”

To hear more insights from the panel, watch the full webinar “Rewriting the Oncology Patient’s Journey” on demand by clicking here.

Subscribe for Updates

Receive our latest news and research from thought leaders in the RWD industry
  • This field is for validation purposes and should be left unchanged.