Patient engagement in clinical research has had a profound impact on the healthcare we receive, regardless of whether or not we’ve directly participated in a clinical trial. As individuals, we all become patients at some point in our lives, for many, the first time being our births. While minor ailments like a sprained ankle, a cut that needs stitches, or the flu may require a quick visit to urgent care, we often overlook the importance of our recovery plan. It isn’t until severe illness strikes that we become genuinely engaged in our healthcare because now we must live with the uncertainty of a disease or chronic condition. If patient engagement is limited to clinical research, in this regard, it’s falling short. Improving the informed consent process for clinical trials to empower patients can step in to fill the void.
According to the World Health Organization (WHO), patient empowerment is a process through which individuals gain greater control over the decisions and actions affecting their health. This process encompasses all aspects of healthcare: the individual’s personal journey, the providers’ and community’s involvement, and the healthcare system. By shifting our focus from patient engagement to patient empowerment in our communication practices, we ensure that we meet the needs of patients no matter the severity of their current health status. We help them understand their options, improving their collective health literacy and keeping them engaged throughout their healthcare journey.
At the Center of it All, the Patient
Patient empowerment isn’t as simple as granting power to patients; it involves equipping them with essential knowledge to improve their health literacy and skills so they can actively engage in their healthcare journeys. Patients do not assume complete control nor shoulder the sole responsibility for their care, however, as patient empowerment is never an excuse to neglect or burden patients. The volume of available information, including misinformation, often leaves patients feeling overwhelmed and confused, which may lead to inaction.
To successfully empower patients, the necessary tools and information – including the informed consent process for clinical trials – they receive should help them understand their role in the healthcare process and how participation benefits them and the entire system. When we focus on patient empowerment, our communication efforts encourage patients to actively participate in their healthcare decisions and treatment plans. We can achieve this through engaging and actionable content that respects each patient’s unique needs and circumstances, speaks directly to their love language, and promotes a collaborative relationship between patients, providers, and the healthcare system.
For example, in early 2023, Eli Lilly committed to cap the price of insulin at $35 or less, regardless of a patient’s insurance status. Before this decision, advocacy groups had been tirelessly campaigning for this change. Our case study detailing The Affordable Insulin Project was one such initiative.
In 2020, Eli Lilly partnered with the Diabetes Patient Advocacy Coalition (DPAC) and Stark / Raving to launch a joint pilot campaign to educate and empower patients on ways to better advocate for reducing out-of-pocket insulin costs. The campaign focused on delivering practical solutions to patients and employers to reduce the exorbitant out-of-pocket expenses associated with insulin. To address this challenge, our strategy focused on developing fresh, distinctive content designed to meet the unique needs of our target audiences in terms of format and delivery method. We’ll reference this project more throughout this article.
The Provider
Recognizing the importance of patient empowerment, healthcare providers are responsible for establishing an environment of mutual respect and shared decision-making, understanding that patients are not passive recipients of care but active participants in their treatment journey. When patients have sufficient health literacy, it leads to better outcomes as they become better advocates for their own care.
Our communication and media outreach efforts should prioritize assisting patients in gaining a deeper understanding of their health conditions, available treatment options, potential risks and benefits, and the implications of their choices. Ultimately, this lets patients actively participate in their care, improves their experiences and health outcomes, and allows for a more patient-centered healthcare system.
During our collaboration with Eli Lilly and DPAC, our content strategy for advocating for more accessible insulin access concentrated on merging data-driven evidence with practical guidelines. To make this complex information more engaging and accessible to our readers, we collaborated with members of advocacy groups, created visually appealing infographics, and simplified the content to be impactful and easy to comprehend.
The Community
When communities are actively involved, we can establish a supportive ecosystem where patients feel connected, understood, and supported outside their provider’s care, further enhancing patient empowerment. This can be achieved by creating opportunities for sharing experiences, mutual learning, and collective action through support groups, patient advocacy organizations, social media platforms, online forums, and community outreach programs.
For instance, we developed a digital rallying point for patients, families, and advocates in The Affordable Insulin Project. To provide patients and their families with a centralized location to access all available content, resources, and incentives to support their mission to lower the cost of insulin, we set up a website as a home base. This platform enabled individuals with diabetes to connect, trade tips, and share their experiences through social channels. This collaborative effort contributed to data collection and research, providing valuable insights that could be leveraged to expand our reach.
Collecting data from diverse patient populations and communities in this way helps uncover health disparities, identify unmet needs, and tailor interventions to better address specific challenges faced by different groups. Through partnerships with advocacy groups, we discovered opportunities to directly engage with their members and provide them with high-value content through email marketing. We could access our partners’ databases to communicate our mission, convey our message, and encourage their active participation in our program. These types of engagement strategies are necessary to improve our healthcare system and promote its diversity, equity, and inclusivity.
The System
Numerous systemic issues impact the functionality and fairness of our healthcare system. To name a few, a lack of universal insurance coverage and high costs, health inequalities based on race, ethnicity, income level, and geographic location, the fee-for-service model, a limited focus on preventive care, administrative complexities, and, of course, skyrocketing prescription drug prices. We can address these many challenges through patient advocacy and advocates who play a crucial role in campaigning for policy changes.
Effective communication tactics that deliver patient-centric content that educates and empowers patients to take a proactive part in systemic reform is a daunting task but not an impossible one. In our partnership with Eli Lilly and DPAC, we created a comprehensive range of interactive tools, worksheets, and resources to guide patients through the process of calculating the overall cost of diabetes, submitting appeals to their insurance company, and approaching their company’s human resources department to increase insulin coverage. Filling this information gap helped patients advance their cause.
Embracing new technologies such as AI can also offer more streamlined solutions that support advocacy efforts. However, it is crucial to approach AI adoption cautiously, recognizing privacy concerns, transparency, legal and ethical considerations, potential job displacement, and the inherent bias in large-scale data collection. Ethical AI practices in patient advertising protect patient rights and contribute to a more patient-centered and trustworthy healthcare ecosystem.
Conclusion
Patient empowerment is fundamental to creating a patient-centered healthcare system that prioritizes individuals’ control over their health decisions. By shifting our communication strategies from patient engagement to empowerment, we empower individuals to actively participate in their healthcare, leading to improved health outcomes. This empowerment extends to healthcare providers, encouraging them to prioritize assisting patients in developing a deeper understanding of their health conditions, available treatment options, potential risks and benefits, and the implications of their choices; the community who’ll foster an ecosystem of support; and advocates who can campaign for policy changes within the healthcare system. By embracing and promoting empowerment across all aspects of healthcare and involving all stakeholders, we can establish a truly patient-centered healthcare system that benefits everyone.