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Health determinants beyond the pill
People’s health outcomes are determined by many factors beyond the medicines and treatments they take. Genetics, behavior, social circumstances, environmental and physical influences all play a role. By improving our understanding of all health determinants, we can better help the patient and care partner community through, and beyond, the medicines that we produce.
If you are physically sick, you would in most instances go to a doctor and seek treatment, but when it comes to your mental health, it’s not always a simple process to seek help. Yet mental health plays a significant role in a person’s overall wellbeing and can affect how someone lives with and manages their condition.
Juggling the daily impact of a diagnosed or undiagnosed health condition puts considerable pressure on a person. For some diagnoses, people may also have the worry of facing stigma or fear of being ostracized. This is made worse when health inequity means people are unable to access the healthcare or personal support they need within their community. And the problem has been compounded by the COVID-19 pandemic, which has caused additional stress and isolation. All of which can cloud a person’s judgement, sap their energy, and undermine their ability to remain engaged and be their own best advocate during an often-complex treatment journey.
The Behavioral Science Consortium and Patient Partnerships team at Astellas
The Behavioral Science Consortium (BSC) and the Patient Partnerships team are two teams that fall under the umbrella of the Patient Centricity division at Astellas. The teams are dedicated to the Astellas patient centricity vision of supporting the development of innovative health solutions through a deep understanding of patient experience, medical needs, and behavioral drivers of care.
The mission of the Astellas BSC is to develop a better understanding of patient behaviors and interactions in the real world to inform treatment decisions, identify ways to improve people’s healthcare experience, and enable more complete understanding of the journey people are on.
“We are dedicated to understanding and improving the patient experience, by studying the effect of individual, environmental and cultural factors, and life experiences that impact people who are managing chronic conditions and other illnesses,” says Lisa Mattle, Senior Director and Head of the BSC.
The BSC enlists an esteemed, multi-disciplinary team of global professionals, each of whom brings diverse expertise and perspective to the table. Members of the BSC faculty include epidemiologists, sociologists, anthropologists, behavioral economists, psychologists and more.
One of the BSC faculty members, Kyoko Nomura, Chair Professor of the Department of Environmental Health Science and Public Health at Akita University, Japan, explains: “Before we encourage patients to begin active treatments, we must first understand why they face difficulties. We know that health behavior is influenced by culture, diversity, gender, social and environmental factors, which is why the BSC members come from different backgrounds, cultures, countries, and educational backgrounds. This diverse representation brings a multi-faceted lens to bear on all of our efforts.”
The Patient Partnerships team is dedicated to working alongside patients, care partners and patient advocacy organizations to improve the overall healthcare outcomes for patients and care partners.
“Whether you are a family member worried about a loved one or a patient anxious about what the future holds, everyone has a story to tell, and the Patient Partnerships team is listening, learning and collaborating with patients, families and care partners to understand what truly matters to them and change the way Astellas develops medicines,” said Doug Noland, Executive Director of the Patient Partnerships team.
Working in close partnerships with the advocacy community, the team connects patients and care partners with Astellas scientists and employees to help truly understand what matters to them. These insights and experiences shape the way Astellas develops medicines, whether these are in the early discovery phase, in clinical trials or already in use in the real world.
Understanding and supporting the patient and caregiver community
The BSC is working to understand cultural factors, attitudes, beliefs, and biases in different countries since these factors impact how patients and caregivers behave when faced with healthcare diagnoses and decisions. “We are hoping that, in addition to supporting people and their loved ones, the insights can also inform how the Astellas team designs outreach campaigns, raises awareness, decreases stigma and promotes education regarding a given condition,” says Lisa.
Similarly, traditional gender roles in some societies may impact a patient’s experience once they have been diagnosed with an illness. For instance, Kyoko notes that in Japan and other countries, women traditionally take on the role of primary caregiver for their families, so when they are diagnosed themselves with chronic or life-threatening conditions, they may not have adequate support without active intervention.
When it comes to women’s health, “it is really important to understand and appreciate that there are many different cultural factors that shape women’s identities and experiences with regard to health and wellness,” adds Kyoko. For example, the Astellas team working in women’s health is looking at vasomotor symptoms (VMS), such as hot flashes and night sweats, in women who are going through menopause. They uncovered that VMS are often not discussed during physician visits, so many women who are impacted by VMS are left untreated. The BSC assisted with the development of interview guides for research to help understand why healthcare providers and patients don’t talk about VMS. The BSC made sure these interview guides were informed by behavioral and social science so they really addressed the core emotions, attitudes and biases that may prevent women from seeking or receiving treatment for their VMS.
Meanwhile, certain types of illnesses impact patients of different age groups, so the experiences and burdens on caregivers varies across the generations. In some cases, the caregiver group may include primarily the patient’s parents, but in other cases it may be the patient’s grown children, leading to a role reversal (children now caring for parents). The BSC is working to better understand how for example cultural factors may impact both patients and caregivers in such a situation.
“It’s important to realize that caregivers are only human, too — they are people with jobs and families and lives of their own. Having to provide emotional, physical, and logistical support for someone else on top of that is challenging. It places additional demands on the caregivers’ time, energy, and mental health, and can make them feel overwhelmed and frustrated, sometimes even angry or resentful,” says Lisa. “Over time, the burden can take a toll both on the caregiver and on their relationship with the patient. If we want to ensure optimal care and outcomes for the patient, caregiver needs have to be addressed as well.”
Translating insights into action
The insights that the BSC and Patient Partnerships teams uncover are translated into tangible action in a variety of ways.
The BSC does this in three core ways: First, through its behavioral science curriculum, which provides internal education and resources, such as webinars, workshops, infographics and live summits with the BSC faculty on a particular topic. Second, through its behavioral science projects, where the group works with other teams in response to a particular challenge, leveraging the expertise of the BSC faculty and social science investigations to develop and answer customized behavior-related research questions or points of view. Finally, through behavioral science collaborations, where the BSC thought partners with practitioners to develop a deep understanding of the impact of specific behaviors and beliefs on real-world patients.
“One interactive workshop we facilitated helped colleagues to learn about cognitive biases and apply what they learned to their work. They can now assess how cognitive biases may play a role in their area of work, and identify ways in which to counteract them,” says Lisa.
Patient advocacy organizations know better than anyone the importance of mental health to the communities they serve. The Patient Partnerships team is working with these groups to support their efforts with the patient and caregiver community and to learn from their experiences.
The Patient Partnerships team recently completed a large piece of insights research looking at stigma in bladder cancer. These insights were made possible by working with patients and care partners in multiple countries and will be used by teams within Astellas to help deliver medicines that better meet patients’ needs. Insights from participants showed the huge impact that the disadvantages associated with living with a disease can have on a person’s mental health and in turn how these change the way that people managed their condition. It also showed that talking to others in the same situation helps enormously and that support for mental health is key.
One in four care partners suffer mental health issues. In bladder cancer, as in many other conditions, carers are unprepared for the life change of caring for someone. Support for care partners, practical but also mental is important, as they can feel just as lonely and isolated, if not more, than the person with the condition. Astellas is now looking into how it might provide emotional or psychological support for the patient community to ensure that people living with bladder cancer receive the best care possible.
Together the BSC and the Patient Partnerships team enable Astellas to better understand how behavior and patients’ mental wellbeing can impact overall health outcomes. Ultimately educating, supporting and working with all stakeholders that play a role in a person’s health journey will bring great benefits to patients.
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