Patient advocacy plays a tremendously crucial role in the cell and gene sector. Jamie Ring, Head of Patient Advocacy at Spark Therapeutics and Cell & Gene Editorial Advisory Board member shared with me valuable information about role of patient advocacy in industry (i.e. what it is; what it’s not; the difference between patient advocacy in healthcare overall versus patient advocacy in gene therapy), which we will cover in detail in the coming weeks. To start, Ring lists and explains the three pillars of the role of patient advocacy in industry.
“When my peers in our field and I discuss the function of patient advocacy in a broader context, we may frame it slightly differently, but overall, there are three pillars that define the function of advocacy within industry,” Ring states.
1. External Engagement
The first pillar emphasizes the external liaison mission, and the goal is to be an ambassador on behalf of an organization for the respective patient communities for which the the company may be researching potential treatments. “Pillar One is the external engagement with nonprofit organizations and advocates themselves living with certain conditions or relatives of people with certain conditions,” explains Ring.
2. Serving the Patient within the Organization
The second pillar serves as a patient representative inside the walls of an organization. “We think of ourselves as the voice of the patient,” states Ring. “When we are participating in strategic conversations where business decisions are made, we, as a function, try to ensure that the company understands and considers the perspectives and insights from the patient population. A great deal of brainpower goes into that, but one important point and characteristic of how we try to do that as best we can is this idea that, if you're performing pillar one well, you are immersed in that patient community.”
Ring goes on to state that Patient Advocates talk to many different individuals affected with various diseases — some patients are more engaged; some are less engaged. Patient Advocates can effectively represent differing points of view from that community and understand the choices the organization makes. “When companies state that they’re patient focused, it doesn't mean that every choice an organization makes should be the one that the patients would want you to choose, because then you're not necessarily creating a sustainable business,” she explains. “It's more about contemplating what that means for the various stakeholder groups. And making sure that is being thought through and that the right communications are in place based on the outcome of a choice. It’s that internal voice of the patient.”
3. Employee Engagement
The third pillar represents employee engagement. “Numerous surveys and studies show that the more an employee is engaged, the better they will perform, and retention rates will improve,” Ring explains. “Feeling a connection to the patients is a tremendous motivator for many employees. By and large, when people talk about feeling inspired in the workplace — in biotech especially — tends to be rooted in, statements such as, ‘I feel like I'm making a difference for patients,’ or ‘I know my work contributes to helping treat patients with products that have positive outcomes.’
Ring stresses that employee connection is crucial to ensure people have access to patient stories and the patient experience for instance by bringing patients and advocates to the company to share their experiences living with their disease. As such, employers must encourage their teams within the organization to think in that patient-focused way. “It's not just about organization leaders checking a box that employees have heard a patient’s story and felt good for that half hour, but rather, helping them understand how they can think about and perform their roles differently because they have a better appreciation of the patient journey,” she states.