Trial Return On Engagement: Quantifying Benefits Of Patient-Centric Initiatives

By Barbara Lopez Kunz, global chief executive, DIA

Return on investment (ROI) is a key metric for business performance, and well-functioning organizations typically bring their stakeholders high ROI.  The “return on” concept can also be applied in measuring how well organizations engage with their customers.

Recent return on engagement (ROE) research from Gallup reveals that brands who successfully engage their customers go on to see 63 percent lower customer attrition, 55 percent higher share of wallet, and 50 percent higher productivity. Our experience and collected data point toward ROE benefits as being significant in healthcare product development as well.

Patient engagement and patient-centricity have emerged as key aspirations of healthcare product organizations in recent years, as companies are realizing that a key to growing their business and improving customer health is to better focus on the needs and concerns of the patient, rather than just on the elements needed for product approval. 

For more than a decade, DIA has worked to amplify the voice and concerns of patients and patient advocates to the healthcare products community. Our Patient Fellowship Program, the development of patient and advocate training, and the creation of tools to begin patient-centric initiatives (PCIs) have helped bring structure to the ways we approach PCIs.  

However, it became clear to us that stakeholders in healthcare product development — industry, regulators, patients/advocates, and others — need tangible guidance on how to approach patient centricity, and how to quantify the benefits of PCIs as well as measure ROE. This need for insight prompted DIA to collaborate with the Tufts Center for the Study of Drug Development (CSDD), to conduct our Study of Patient-Centric Initiatives in Drug Development, which is designed to find ways to measure ROE, and identify ways for stakeholders to jump-start their move to patient centricity.

Initial results from our study confirm what we have been hearing from DIA members: “We want to be more patient-centric, but we are struggling with how to do it — to quantify how better engagement will lead to successful therapies and improve a patient’s experience in a meaningful way.” Alternatively, as a healthcare product development organization, what is the most meaningful way to measure return on engagement?

There are three key steps to take when exploring the best way to measure what matters most when it comes to patient engagement:

Define the meaning of patient engagement for your organization. Before starting a patient-centric initiative (PCI), you need to define what patient engagement means for your organization and what insight you hope to take from this engagement. You also need to answer some important questions: What types of patients and patient advocacy organizations (PAOs) do you want to engage? What specific information are you seeking? Is your approach based on many single patient interactions or do you seek feedback from the larger disease-state PAO perspective? How are you communicating with/involving them? This can mean communicating in a manner that is sensitive to patient-specific concerns and includes working toward ways that make engagement with your organization convenient for patients (e.g., helping them with the logistics of trial participation).  Also, engaging patients and PAOs as early as possible in the healthcare product development process elevates patient needs and concerns throughout the development lifecycle.

Consider various approaches to get meaningful engagement outcomes. The initial results of the continuing DIA/Tufts CSDD patient-centricity study identify a number of PCIs that are not complex or expensive to start, yet yield valuable patient-centric results. For example, our study data showed that clinical trial time and cost performance can improve when patients are engaged in protocol development. The study also highlighted three low-cost/high-benefit PCIs that are relatively easy to implement: advocacy group support and involvement (e.g., HIV/AIDS, Duchenne Muscular Dystrophy, and others), patient advisory panels, and social media engagement.

Find metrics that show the value of return on meaningful engagement. Patient engagement metrics can clarify and elevate the value proposition of PCIs and
can help an organization’s leadership steer resources and focus toward true patient-centricity. Industry is still reaching to find the right mix of metrics to measure true ROE, but our study has revealed successful examples of quantifying patient engagement ROE, including:

• Trial performance improves (faster planning, approval, and enrollment; fewer protocol amendments)
• Study volunteer feedback is more positive and patient activation measures (PAM) scores are higher
• Internal and external reach improves, particularly with use of technology
• Long-term drug development portfolio improves as companies can lower development costs through relatively inexpensive PCIs.

Each organization’s patient engagement approach will be unique and should be designed with feedback and input from patients as early as possible. DIA realized this in our own experience engaging patients and their PAOs. Following the three focal points above —  defining true patient engagement and goals, trying low cost/high value PCIs, and finding the right metrics for measuring PCI benefit — are good starting points toward realization of patient-centric ROE.

About The Author:

Barbara Lopez Kunz, M.S., is global chief executive of DIA. She is leading the transformation of DIA through developing and implementing a strategy that focuses on engaging the global healthcare community in DIA’s neutral platform, to drive thought leadership and innovation in the development of therapeutics to improve the health of people worldwide.