How big data and patient-friendly design can help you find and engage your patient population.

The pharma industry has a challenge when it comes to clinical research -- sponsors want patients to enroll in trials, but patients have little incentive, motivation or opportunities to sign up. One study of cancer research found fewer than 1 in 20 adult cancer patients (five percent) enroll in clinical trials, despite the fact that 75% of US patients believe taking part in clinical trials is as valuable to our healthcare system as giving blood.

The problem is that patients lack the confidence to find trial opportunities on their own, and less than 0.2% of patients report being referred into clinical trials by their physician. Patients may also be fearful of the trial experience, wary of the safety and effectiveness of clinical trials, and dismayed by the burden it can put on their daily lives.

The gap in connectivity between patients and research, and lack of patient-friendly trial environments delays enrollment, drives-up cost, and slows the process of bringing life-saving drugs to market.

It’s a chronic problem but it can be solved. When pharma companies leverage big data analytics to find and recruit patients, and create more patient-friendly trial experiences, they have a much better chance of engaging patients and meeting their recruitment goals.

Finding patients in the data

When there is strong competition for patients, pharma companies can’t rely on personal relationships with investigators and past site history to build their recruiting strategies. They need data and analytics that can tell them exactly where treatment-naive patients are clustered, who’s treating them, and what messaging they and their physicians are most likely to respond to.

Pharma companies can gain this insight by using artificial intelligence-driven data management platforms that are able to analyze vast repositories of healthcare data to inform every aspect of their recruiting strategy.

These platforms use machine learning algorithms to answer questions ranging from the best countries to host trials and the preferred investigators to run trial sites, down to the right combination of inclusion and exclusion criteria to speed recruiting and reduce screen failures while lowering avoidable protocol amendments and inefficiency costs. These platforms can also provide detailed information about community physicians who are treating patient populations of interest, ensuring sponsors craft marketing strategies that will hasten patient referrals.

This combination of macro and micro insights can be a game changer in rare disease and oncology indications, where small populations and growing competition for patients makes recruiting a constant challenge.

But to achieve this level of precision, sponsors need advanced technology that can assess multiple real-world and clinical data types from a variety of global sources. These data can be difficult to access, and vary in reliability based on the maturity of the national healthcare system, local data privacy regulations, and the granularity of the data captured. But when sponsors work with industry experts who have the data management knowledge and advanced analytics tools to analyze these data sets, it can cut months and millions of dollars from the recruiting lifecycle.

The patient stakeholder

Knowing where and when to recruit is only half the battle. Even if pharma companies can connect the right patients with the right trial, they won’t agree to participate (or stay until the end) if the trial experience is frustrating, burdensome, or lacks clear personal value. Studies show patient dropout rates in phase 3 clinical trials can exceed 30%, translating to hundreds of thousands of dollars lost. No matter how much money sponsors spend to find trial candidates, unless they create a positive patient experience, those investments won’t fully pay off.

Participating in a trial can be time-consuming and burdensome for patients, which heightens the risk of attrition. Patients are also increasingly frustrated by the lack of transparency and data-sharing in the trial experience. IQVIA’s 2019 patient community survey found that if patients are going to be a part of clinical research, they want feedback, including access to their own trial data (89%), updates about upcoming trials (81%), study statistics (78%), and reminders and calendar tools (52%) to make participation easier. When this data transparency is lacking, they are less likely to stick around.

While some of this data is difficult to share due to statistical integrity of protocol and regulatory and intellectual property issues, in other cases, the trial culture has not adjusted to treat patients as active stakeholders in the research process. In our survey, patients reported struggling to find even basic data, such as when the study will start, how many visits are required and when it will end. And they are often surprised by how little information they receive about the trial’s progress and their own healthcare data.

This data can be shared with the right technology – and it can have profound impact on patient engagement. IQVIA recently launch a patient portal to address this need. The portal takes a human-centered design approach to patient data-sharing, providing access to information before, during and after a trial that affirms their importance in the research process, while maintaining the integrity of the clinical data environment.

However, technology alone won’t make patients feel valued. As an industry, we must demystify the clinical trial process and start treating patients as a valuable addition to the team.