Medical patients can thought of as benchwarmers – closer even to spectators – in the healthcare game, watching pharmaceutical companies, large physician practice groups, and insurance companies call and run all the plays. But now, times are changing, patients are stepping onto the field, and they’re not just there to cheer. They’re taking the wheel (or, at least, the clipboard) in a shift with the potential to redefine healthcare. Should the corporations hand over, or at least share, the keys? Recent data suggests the answer is a huge yes; patient involvement in healthcare can result in better treatments, stronger trust in relationships between patients and medical practitioners, and fewer wasted resources.
Thanks to the internet, patients are evolving from passive care recipients to informed, more empowered participants in their care. Due to Google searches, Reddit threads, the occasional YouTube explainer, and much more, patient involvement is increasing. One survey of 2,000 patients found that 80% research the medications they take, and over 70% actively seek information about health services relating to their conditions. The “doctor knows best” model simply isn’t good enough in the big data era.
Pharma, however, has been slow in adapting to their consumers’ new reality. Traditional drug development has often treated patients as simple users, and never collaborators. As a result, treatments miss the mark for a significant proportion of the population, and patients’ needs often remain ignored.
Recent research demonstrates that by listening to patients, pharma companies can create treatments that truly fit all of their needs. Think of it like a custom-tailored suit, rather than a clearance aisle sweater. Big pharma appears to be slowly learning that understanding patients’ needs and innovating to fulfill them can produce better results. As just one example, Roche’s oncology program uses patient-reported outcomes to improve its cancer therapies. This has led to increased survival rates and fewer side effects of treatments. Beyond just cancer, personalized medicine in general reduced adverse drug reactions by 30%, according to a PREPARE study.
Pharma’s image isn’t exactly squeaky clean. High drug prices and cloudy processes have left patients skeptical. Increased patient involvement in their activities, these companies are finding, can easily turn this around.
According to a 2022 Edelman Trust Barometer, trust is one of the top factors in determining whether patients engage in healthy behaviors. Pharma companies can build and maintain trust with patients through long-term collaboration, transparency, and responsiveness. One study by Janssen Pharmaceutical found these goals can be achieved through measures such as patient advisory boards, implementation of patient recommendations, and providing patient access to final results. When patients play a direct role, trust is established, resulting in a better product that changes lives.
Pharma has plenty of gifted technical minds; however, new data reveals that no lab experiment can replicate the insights patients bring from their own lived experiences. AbbVie learned this when developing a Personal Support Program alongside patient groups for patients taking adalimumab. According to a study of 2,268 patients, participation in the program increased medication adherence by 29.3 percent. Pfizer learned the hard way that the reverse is also true. It withdrew its inhaled insulin powder, Exubera, less than two years after gaining FDA approval because patients found it too burdensome to use. This error cost the company at least $5 billion.
Congress has now mandated that the FDA incorporate patient viewpoints and experiences into the development and approval of drugs via the 21st Century Cures Act. Why? Because patients help ensure drugs address real-world needs, not just theoretical ones.
Research suggests involving patients can even save money. Developing new drugs requires significant funding, with pharma’s R&D costs increasing every year. Twenty to 30% of patients drop out of clinical trials, which prolongs trials and increases costs. By engaging patients in trial design and marketing, pharma companies are more likely to be successful in recruitment, adherence, and retention, thereby eliminating the cost of high dropout rates. Moreover, including patients in trial design results in more patient-friendly protocols, which has been found to decrease the number of protocol amendments needed. Each amendment adds 90 days and $560,000-$2,100,000 to development. Including patients in early study design and avoiding costly amendments can accelerate a product launch by 2.5 years and add a monetary value greater than 500 times the cost of patient involvement.
Making room for patients is by no means an easy task. Setting up feedback systems for patients and co-designing solutions is expensive. Yet, some companies are beginning to invest in technologies like virtual clinical trials, to significant benefit. Novartis, GSK, and Sanofi have launched this concept to decrease patient recruitment time, streamline the consent process and data collection, reduce costs, and potentially cut trial duration by at least 30%. Initiatives like the FDA’s Patient-Focused Drug Development initiative are helpful, but more work is needed to improve and standardize practices throughout the world.
There are solutions available using strategic collaboration and innovation. Pharma companies can establish patient advisory boards to advise on unmet needs, protocol practicability, and trial outcome measures. They can partner with tech firms to develop patient-centric cost-effective digital tools. They can implement patient feedback methods to share trial experiences, concerns, and suggestions. And they can invest in education by partnering with patients to co-create resources that promote medication compliance and address side effects. With the right strategies, today’s challenges become a winning formula that unites pharma and patients in a healthcare system driven by, and optimized for, patient needs.
