What Exactly is Patient Centricity?
The term patient centricity has become ubiquitous within industry. But what does it really mean? Asking around, we find that it’s become more empty jargon than actionable language. This is not to say that keeping the patient top of mind when developing strategies and innovating isn’t important. It is important. In fact, it is critical to business success.
But keeping the patient top of mind isn’t patient centricity. Engaging patients, leveraging their insights, and providing them with opportunities to influence key decision makers to improve all areas of the product life cycle is patient centricity. And if industry wants to actually be patient centric, it will need to move beyond the “why” and finally address the “how”.
Continuum Clinical’s Advocacy Relations team has challenged itself to operationalize the concept of patient centricity to make it actionable and attainable for industry partners. This is not to imply that we’ve learned all that there is to know about patient centricity, but we continue to optimize when and how we engage patients, while continuously uncovering new ways to engage, leverage the patient voice, and influence key decision makers.
When we think about the product life cycle there are so many opportunities to successfully engage patients and leverage their experiences to work smarter and better for both their benefit and the benefit of industry. Continuum has had the opportunity to work in many of these areas.
How Continuum Clinical has Operationalized Patient Centricity
Clinical research design and protocol development.
Recently, Continuum Advocacy Relations was providing support on a chronic pain study and we attended multiple local support group meetings to share information about the study and collect patient insights. During that process, we fostered strong relationships with patient advocacy groups, support group leaders, and patients. We learned there was going to be an FDA committee meeting with an open public hearing component. The public, including patients, would have a platform to share their insights.
This public hearing was particularly important because the advisory committee was voting on whether to divide an already underserved patient population into two smaller subsets. Separating the groups could have a detrimental effect on clinical research investment (because it could become cost prohibitive) and ultimately would not serve the patients who needed help the most (because industry would have to choose only one subset to study). Additionally, the advisory committee was interested in the impact of changing the tools necessary to measure the end points and impact of clinical research, which would either support or disprove the hypothesis that the population should be divided.
Through our outreach and engagement work, the Advocacy Relations team knew of patients who had indicated an interest in sharing their story, so we connected with those patients to share the opportunity to speak at the FDA. Unfortunately, due to their pain condition, many patients could not travel to Maryland to speak, so one patient and one caregiver recorded a video on a cell phone and sent it into the FDA as their public testimony. When the FDA required the patients to identify a person who they trusted to represent them, each patient – independent of the other and of my input – asked that I stand in front of the FDA on their behalves. Along with a leading national patient advocacy group, Continuum was part of sharing five different high-impact patient stories. These experiences were quoted multiple times by the advisory committee during their vote and rationale for their decision.
The “how” of patient centricity was to
- Identify patients who would want to share their experiences
- Connect these patients to events and meetings where they could make a positive impact on key decision makers
- Represent those who could not represent themselves without influencing or impacting their story
In sharing their compelling experiences living with a chronic pain condition, these five patients influenced how the FDA understands the patient population and how regulators should evaluate trial design, create better patient-reported outcomes tools, and define appropriate end point measures.