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Working in Concert for Patient Centricity
Dr Roslyn Schneider on the challenges of integrating the patient voice throughout the entire organization.
There has been a shift in mentality within the pharma industry to one that is more patient-centric. We interviewed Dr Roslyn Schneider, the Global Patient Affairs Lead at Pfizer, about the challenges of adapting to this shift and the need for a new game plan.
Incorporating the Patient's Voice
Schneider believes that the traditional approach to medicine has been paternalistic, with the doctor being the learned professional and the patient being told what to do. With information increasingly accessible to everyone, this has changed and patients have new capabilities that enable them to become more involved in treatment decisions. This is a change in perspective that allows for the necessary culture shift within the pharma industry.
“It’s a change and change is hard,” explains Schneider. “Healthcare providers have had to adjust, which can be a challenge. I think it’s something we all need to work through.” She adds, “The patient’s voice has long been essential to our work at Pfizer and other companies, but it isn’t enough to just embrace the patient’s voice anymore. We have to incorporate that voice in new ways and do it systematically - and that’s the part that really takes time.”
Role of Global Patient Affairs Office
There has been a new recognition at Pfizer, as well as other companies, of the need to change the culture and provide a framework for how to implement such change. Indeed, there is greater understanding of why a patient-centric approach to medicine development is essential. “I think most of us truly believe that it would be useful to have more patient input,” says Schneider. It is the how and when of patient centricity that is the more challenging part.
That being said, it’s not about patients having input in every aspect of developing medicines. “We have to identify where the biggest and most important gaps are and prioritize when, how and why certain gaps should be addressed first,” explains Schneider.“It takes a lot of time and effort to gather this information. We appreciate that providing insights toward the medicine development process is an extra effort for patients and caregivers, and the methods used to appropriately engage patients and gather the information needs to accommodate them. Patients are busy being patients and living their lives.”
The new health ecosystem needs to be more about health than disease, and more about how people live their lives than about the specific diseases themselves".
Having a person in a named role increases accountability in driving patient centricity, which translates to saying that the new approach matters.“My role is more of a driving role than a coordinating or implementing role,” Schneider explains,“so the actual implementation of policies doesn’t fall within my department. Part of my role is that I’m the appointed ambassador, but not the only one within the organization. My job is to help develop the concepts, provide the layout and connect different people and groups who need to be involved.” In other words, the implementation of patient centricity needs to include everyone involved in the process of medicine development.
“There is a willingness to share practices across the company as long as people are given the opportunity and forum,” Schneider comments. The office of Global Patient Affairs is one such forum. “I’m reaching out across our businesses and regions and across functional groups to discuss the concepts of patient centricity, exchange ideas and, most importantly, to engage champions.” Having someone who will take the lead in such a big organization has the potential to light the spark to help reach the entirety of the corporation. The existence of Schneider’s role also makes it easier to address individual gaps.“The new health ecosystem needs to be more about health than disease, and more about how people live their lives than about the specific diseases themselves,” she adds.
Medical Background Influential in Approach
Twenty years of clinical practice medical experience influences the role and was among the reasons Schneider was appointed to her position. This experience lends her the conviction and authority to explain convincingly why patient input is vital within the pharmaceutical industry. “The whole reason why I became a doctor was to treat patients and do what is right for them,” she says. “What might be right for one patient may not be right for everyone.”
Having the experience of working in medicine, with its individual stories and examples, has been essential for Schneider’s approach to her role at Pfizer. “That is another reason why this office is determined to say that at Pfizer, implementation of the new approaches must be undertaken locally - because the people who are most keenly aware of the local and regional regulatory guides (as well as following Pfizer corporate policies) are the ones closest to the patients and with the appropriate relationships with patient organizations,” she emphasizes.
Working in Concert
Is it important to have the organization working in concert when it comes to patient-centered initiatives, we ask. “I think it’s very important,” Schneider says, “and the word ‘concert’ really gets to the point because we’re trying to get to a harmony that is needed and wanted.” She argues that it is important to try to create the right result for everyone involved, across Pfizer and for patients and doctors as well.
You have to be ready for unexpected results when you have so many people involved and it is essential to be aware of the reactions of stakeholders. There needs to be a leader who is leading the way. “It needs to work like an orchestra,” says Schneider. There also may need to be different approaches for different audiences, she explains: “You may not sing the same way when you play for different audiences.”
“The main challenge is that we’re operating on a beating heart and you can’t afford the heart to stop while you think, plan, or shift culture; you have to keep doing what you’re doing to move forward because there’s so much at stake for patients and all of our stakeholders,” says Schneider. There needs to be an open-minded mentality to have the conversation about what can be done, what should be done, and when it should be done, whilst also carrying on with day-to-day operations.
One way to achieve this is to keep having conversations about what has been undertaken so far and, as Schneider says, “Uncovering the ‘aha’ moments that teams have experienced in the past that allowed them to do things in a different way; saving time and resources, as opposed to adding time and resources to the overall picture.” This makes it easier to garner support and willingness to change from across the organization. For example, the team working on sickle cell disease in the US engaged medical ethnologists to follow patients around to see what it was like to live with the disease. This ended up being helpful in designing a clinical trial that may make more sense for both the corporation and for the patients and how they live their lives.
Schneider has found that there is a great deal of willingness and optimism to make changes towards patient centricity. Even though the pharmaceutical industry is a competitive one, there seems to be an eagerness to appropriately share pre-competitively and collaborate, not only within and between companies, but with academia, patient representatives, and health authorities. “This is because we’re all trying to do the same thing and recognize that patient centricity is the right goal,” says Schneider, “but it’s not easy to know how.”
In terms of the gaps that still need to be filled, Schneider warns about overburdening patients. “If you want a patient’s input on their disease, it is essential to recognize that they already have it, they’re living with it.” However, in order to ask them to give input about a clinical trial protocol, she explains,“They need to understand and know what a clinical trial is.” There needs to be more resources and training to help inform and empower patients and advocates so that they can be more confident and capable to provide input. A good example of this is the European Patient’s Academy on Therapeutic Innovation (EUPATI), where there are several measures being taken in order for patients to understand clinical trials and the medicine development process better, as well as existing programs and others being proposed.
Another gap is in how to measure the level of success of different programs and policies. An essential factor to measure is if patients and stakeholders view pharmaceutical companies as patient-centric and Schneider reports that the available metrics aren’t very effective yet in benchmarking and assessing improvements in patient centricity as we are now describing it. Nevertheless, it is clear that efforts are in place to help ensure that patients will have more active roles in medicine development, in collaboration with pharmaceutical companies like Pfizer.
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