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.

Leveraging the patient voice for clinical trial enrollment.
To operationalize patient centricity, we must tap into and leverage the patient voice throughout each stage of the product life cycle. To truly have the patient top of mind and incorporated into strategy, planning, development and commercialization, there must be a direct, clear and strong connection to patients and/or patient groups.

Continuum’s Advocacy Relations team has been able to do this successfully in two ways:

• Building partnerships with groups that provide insights and high-impact outreach opportunities for trial enrollment
• Leveraging insights provided by these partners for multiple studies

Recruiting for clinical trials can be difficult due to a number of factors. While many of these externalities cannot be controlled for, there are ways to improve and accelerate trial recruitment, including reaching and activating qualified patients. Patient advocacy groups are trusted resources for patients, many of whom are looking for scientifically accurate information about their condition, options for care and treatment, or hope for something new and innovative on the horizon.

Advocacy Relations realizes the inherent value in engaging these groups, because they have a direct line to many of the patients who could benefit most from clinical trial participation or the outcomes of research. To understand an organization’s mission, its priorities, and its most effective communication opportunities is to move from reactive and purely tactical outreach to proactive and strategic engagement.

Our Advocacy Relations team has one particular partner who reviewed a pre-enrollment website and noticed that the condition definition was not as accurate as it could have been. This was missed by both the pharma client’s internal teams and IRB. However, upon hearing the patient advocacy group’s language recommendation, the client immediately approved the content and submitted to IRB. Additionally, patient advocacy groups can help ensure that any patient-facing content is culturally appropriate, at a language level that is understandable for the patient audience, and reflective of their experiences.

This is not the only patient advocacy group partner who has provided valuable insights and strategies for effective outreach. In fact, we have built strong relationships with a number of groups across multiple therapeutic areas. These have been built over time through consistent, transparent communications and by acting with integrity no matter what the situation. Gaining the trust of advocacy groups is a direct path to gaining the trust of patients. When groups know you are committed to empowering patients with scientifically accurate information and you engage them by asking for their insights, you create a sense of shared ownership. Appropriately communicating what has developed over the course of a study helps us achieve more together as true partners.

Conclusion

We may think we know the implications of living with a condition and the impact of therapies on treating it, but without having the firsthand experience of living with a condition, we truly do not. And we cannot do what’s best for the patient and for our respective business until we come to recognize and actualize that the ideals of patient centricity will be hollow until we put them into real practice with the help of our advocacy partners and the patients themselves.

With patients eager to share their experiences, it would be poor logic to exclude them – and the very thing they can provide to help achieve business success – from the discussion.