What Does Success Look Like In Patient Centricity?
By Ed Miseta, Chief Editor, Clinical Leader
When Dr. Anne Beal was appointed Chief Patient Officer for Sanofi, she was tasked with the responsibility of further elevating the perspective of the patient within the company. Since then she has worked to promote patient engagement to better incorporate an understanding of their needs into the daily activities of everyone within Sanofi.
Beal is quick to note that much of the focus on patient-centricity is really nothing new. In the late 1960s the American Academy of Pediatrics was already looking into the concept of patient- and family-centered care. The overriding theme was around how to put patients at the center of clinical practice.
In the mid-1990s, shared decision making began to surface as an opportunity for patients to actively engage as partners in their own care. “Patients were involved in shared decision-making, and healthcare professionals were even providing them with the tools to enable it,” says Beal. “We found that when patients were knowledgeable, empowered, and involved with choices that had to be made, there were improved outcomes for everyone.”
Beal notes the involvement of patients in clinical environments started to move forward around the turn of the millennium, although much of the discussion was around patient safety and getting them to speak up and advocate for themselves. The more important trend to note is that while pharma has been placing more emphasis on getting patients involved, patients have generally become less engaged. Despite the changes that were occurring, a different approach was clearly needed.
Everything Old Is New Again
Beal notes that when a decision is made to go in a different direction, the first action should be to go out and see what others have done. Unfortunately, there were not a lot of patient engagement models that had been proven effective. She was not able to look at someone’s experience and say, ‘this is the best way to do it.’ As a result, she quickly realized she would have to make things up as she went along. Her hope was to evaluate and learn from the experience and then share the learnings with others so they could do the same thing.
But forgive some in the industry if they are not taking the talk seriously. While we can celebrate the discussions around patient engagement, it is still the same talk that has been going on for decades.
“That doesn’t mean we shouldn't continue to try,” says Beal, “but we must recognizes the fact that we need to continue to work at increasing the role of patients throughout the entire drug and healthcare system. We are one of the few industries that is far removed from our primary customer. Manufacturers of shoes, cars, and shampoos know more about their customers than we know about ours. We need to engage patients, know patients, and know their needs, and we still have a long way to go. Any company that does not start to actively engage patients will be quickly left behind.”
What Do You Do?
Beal has been making the push for greater patient engagement since joining Sanofi a year-and-a-half ago, after spending almost three years with PCORI (Patient-Centered Outcomes Research Institute). At the time she joined Sanofi, she had spent her entire career outside of drug development. Having never been in the industry, she wanted to learn about patient centricity and what it meant in the context of pharma. Her first six months were spent talking to colleagues to get a sense of what they hoped to accomplish, and how it would impact patients.
When asking colleagues for a definition of patient centricity, she was told it was about making the patient the most important consideration in everything you do. She was told it was about understanding individuals living with a condition and empowering them to make the best decisions for themselves. “For the most part, it all sounded good, but not different,” she says. “It was the same statements made by pediatricians back in the '60s. I know everyone in the organization wanted to make this happen, but there was not a lot of specificity as to exactly what it would mean.”
As a result, she dug a little deeper, and started asking more questions. The main question was, “what will success look like in the context of patient centricity?” She received three main answers to that question. Colleagues noted success would entail everyone in the organization knowing they were working for the patient, outsiders recognizing that Sanofi was responsive to patient needs, and the need for a role like hers to become obsolete because everyone was already patient-centered.
“Those conversations rang true for me,” she adds. “I think that patient centricity is something that should be owned by the entire organization. It should be like quality, safety, or ethics. It should be something every employee is dedicated to without even having to think about it. The value that it brings to the organization is the value of doing the right thing at the right time. It is not something that belongs just in the center of excellence. It belongs to everyone.”
Make It Up As You Go Along
Based on those discussions, Beal started to look at what people were actually doing within her organization. The good news is that a lot of activity was going on. The bad news is that much of the activity resulted from a single effort and not from a specific framework that everyone could work towards. Beal opted to capitalize on the energy and activity that existed in Sanofi, and developed a framework that made use of what people were already doing, as well as where she thought the effort needed to go.
“Remember we were making this up as we were going along, because this has not been done before,” she says. “But we knew it was important to have a current or set of principles to help guide our work. No one has a history of doing this, and therefore no one is an expert. We can talk about promising practices, but none of us can talk about best practices, because we haven't tested and evaluated them. In some ways, that liberates us to be able to try different things, but it also makes us accountable for being able to measure our success and make sure we are having the desired impact.”
A team led by Beal, with inputs from key stakeholders including patients, doctors, FDA representatives and payers, as well as over 100 senior leaders from across Sanofi, developed a transformation framework for patient-centricity. The three-pillar strategic framework defines core values for patient-centeredness, sets a vision for Sanofi as a patient-centric leader, and defines strategic directions for taking patient-centric actions.
The first pillar is “Input and Understanding,” which is designed to bring patient inputs into Sanofi business operations. While the work in this pillar can include market research, it is also about interacting with patients to understand their concerns and unmet needs.
The second pillar is “Outcomes and Solutions,” and it is the effort to develop solutions with patients aimed at helping them address their conditions according to their own health needs. This pillar is taking what Sanofi hears and understands from patients and inserting those learnings into the development of products, devices, and programs. If done successfully, it will create solutions that address peoples’ needs and fit into their lives to improve the outcomes that matter to them.
The third pillar is “Culture and Community,” which seeks to drive patient centricity as a 360-degree business capability, while making Sanofi a more patient-centered organization where everyone feels that what they are doing each and every day is having an impact on people’s lives.
Core Values Drive The Plan
According to Beal, there are four core values which are essential to driving the plan forward. The first is transparency. “Patients do not trust the pharmaceutical industry,” states Beal. “We have to win their trust, and that begins with being transparent about the processes we are engaged in.”
The second principle is partnership. Historically the industry has talked about what it does for, to, and on behalf of the patient. It has not talked about what it wants to do with patients. Beal believes that has to change. Today patients are informed and empowered. They want to talk to companies; they want to talk to each other. Because of the internet and social media, they also know how to do it. Patients can actually engage with pharma as partners. This may be new to some in pharma who are not aware of the basics on how to engage patients as partners.
The third principle is continuous learning and improvement, and emphasizes what Beal mentioned about continuous evaluation. It involves testing something, evaluating it, and seeing if it produced the desired outcomes. If it does, keep doing it. If it doesn’t, go back and try something different.
“I was at a conference recently where Marc Boutin of the National Health Council challenged the industry to fail fast and fail often,” states Beal. “You don't know if you are failing if you are not measuring yourself and trying to learn from the experience. We should be willing to try anything that might benefit patients.”
The fourth principle, and the one Beal thinks is the most important, is a focus on outcomes. She notes all other efforts are simply a feel-good exercise if the industry does not have a focus on how to improve outcomes that matter to patients.
She notes, “If we are just doing this because we want to be able to say that we did it, but we don't hold ourselves and the patients involved accountable for how it will translate into outcomes that are relevant for them, then we are wasting everyone’s time. A focus on outcomes is what I like to call the lynchpin of patient centricity. We can bring people together, and discuss research, p-values, and recruitment. But many patients will look at these analyses, not knowing how it will impact their life. We must always ask ourselves what it will all mean to a patient’s life. If we do not have a clear line of sight into what our efforts will do to outcomes that are important to patients, then patient centricity would be a feel-good exercise. Frankly, that's not what we’re here to do.”