Patient Engagement in the Era of CAR-T

Patient Engagement Roundtable: A Varied Global Picture

As complex cutting-edge therapies come online, industry sponsors are increasingly looking to engage with patients, caregivers, and advocacy groups earlier and more broadly in the drug development process to better understand their needs. However, as the below insights from four of Novartis Oncology’s patient engagement leads show, successfully integrating patient voices means different things in different geographies, where language, education, culture, healthcare systems, and economic factors must all be taken into consideration.

As complex cutting-edge therapies come online, industry sponsors are increasingly looking to engage with patients, caregivers, and advocacy groups earlier and more broadly in the drug development process to better understand their needs. However, as the below insights from four of Novartis Oncology’s patient engagement leads show, successfully integrating patient voices means different things in different geographies, where language, education, culture, healthcare systems, and economic factors must all be taken into consideration.

Patrick Burton on 18.11.2021

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Cancer Patients: Differing Challenges

Karin Blumer

DIRECTOR GLOBAL PATIENT ENGAGEMENT, NOVARTIS ONCOLOGY

Ultimately, my work is meaningless if it does not support my colleagues working on a national or local level and helping the real patients

There are four geographic levels to patient issues. The first is a patient’s local treatment and the impact it has on them individually. The second are national-level issues such as pricing and reimbursement decisions and treatment guidelines. Third are regional-level issues such as the EMA’s approval processes or research policies in Europe. Fourthly, there are issues of a global scope such as scientific trends and global clinical trials. We interact with patient groups according to these metrics, but the real impact for an individual patient always happens locally. This means that, ultimately, my work is meaningless if it does not support my colleagues working on a national or local level and helping the real patients.

We are at a very interesting historical phase for two reasons. Firstly, the digital natives – those who have grown up with self-empowerment and Dr Google – are becoming adults and parents. The generation of non-digitally savvy patients is reaching the end phase of their lives. My generation, now in our 50s, may not be native but we have the internet and digital skills in in our daily toolkit, which is very different from the generation of my parents who are now in their 80s. The inability of patients like my mother to access information autonomously, at least in the developed world, is gradually phasing out.

Secondly, we have had the biggest ever learning and training experience on research and clinical development over the last two years through the global discussion around the development of COVID vaccines. As a positive result of the pandemic, most patients and caregivers – in fact most citizens – now have at least a basic understanding of what drug development and what a clinical trial is.

In addition to this time argument, there is a geographic question about patient empowerment where we still see a very scattered image. In my opinion – one year into my global role – a lot of this has to do with language. The most empowered patients tend to be in countries that are either native English speaking or in those, such as Germany, where school education prioritizes English as foreign language so access to English language content is not difficult.

In countries without high levels of English, not only can patients not access medical information through Google as easily, but they also encounter more challenges in connecting with other patients. The patient empowerment movement has its strong cultural roots in the Anglo-Saxon world.

On a deeper level, another issue may be the paternalistic nature of certain healthcare systems. Within such systems, patients tend not to speak up or challenge their doctors. However, I firmly believe that the maturity of the digitally native generation will challenge this paternalism and encourage greater patient empowerment, no doubt spurred on by the COVID pandemic.

Angeline Ho

COMMUNICATION & PATIENT ADVOCACY LEAD, ONCOLOGY CELL & GENE THERAPY, ASIA PACIFIC CLUSTER, NOVARTIS

The cancer burden in Asia-Pacific is large, but there are significant disparities between the region’s wealthiest and poorest economies in terms of public healthcare expenditure, infrastructure, and levels of training among healthcare professionals

Asia-Pacific is a very large region, holding approximately one third of the global patient population, and it is still growing. The cancer burden in Asia-Pacific is also large, but there are significant disparities between the region’s wealthiest and poorest economies in terms of public healthcare expenditure, infrastructure, and levels of training among healthcare professionals. This makes working in APAC challenging but at the same time very exciting, dynamic and rewarding with many opportunities that can make a difference in the lives of patients.

Increasingly, cancer patients in APAC are becoming more well-informed with the prevalence of the internet and social media, often using these online resources to get more information about possible treatment options. In some cases, patients travel to other regions or countries where there are more medical expertise and treatment options.

For many patients today, the focus of the treatment outcome has shifted from survival alone to also include quality of life. Doctors and patients may have different treament end goals so it is always important for patients to let their voices be heard. What is an issue for the doctor may not necessarily be an issue for the patient, vice versa.

Additionally, in many Asian cultures, being sick is still a sensitive topic. In some cultures, even shameful. Patients in this region may be reluctant to let others know that they had cancer because this may affect their chances at employment, marriage, and how they are perceived as an individual. Therefore, sometimes it is difficult to get patients to share their stories and lived experience.

Melanie Croce-Galis

DIRECTOR, US PATIENT ENGAGEMENT, ONCOLOGY, NOVARTIS

Our large and diverse population is very divided in terms of education and economic levels, and unfortunately, our own healthcare system drives some of that inequity

The US is a big country with robust patient advocacy groups. However, because of this size, there are still many pockets without the necessary information and resources. Our large and diverse population is very divided in terms of education and economic levels, and unfortunately, our own healthcare system drives some of that inequity. There are also significant divides – geographic, racial, economic, etc. – that lead to great disparities in health care across the country and that is one of our major challenges. I’m committed to addressing these disparities to ensure all Americans have access to the information and resources to improve their health and possibly save their life. When patients better understand their treatment options, they can be advocates for themselves and take back a measure of control over their lives that a cancer diagnosis can take away.

There is an added level of financial stress in the US for people with cancer as well. On top of the trauma of finding out that they have cancer, many have to worry about whether or not they will be able to make the necessary copayments, or if treatment will be approved by their insurance company. It is a big job for both caregivers and patients, especially for patients who do not have much in the way of caregiver support. This is something that I am very attuned to and we work hard at Novartis to make sure our patient support services address as many needs as we can so that patients can focus on the most important thing – beating cancer.

Christian Conrad

SENIOR PATIENT ENGAGEMENT MANAGER, NOVARTIS ONCOLOGY GERMANY

As soon as a therapy is approved here it should be reimbursed

Germany is very developed in terms of medical knowledge, science, and health insurance. Almost everybody has some form of health insurance, either public or private. As soon as a therapy is approved here it should be reimbursed.

Although there are many advantages, the issue is that they are not always distributed evenly. Regional problems are common, as the healthcare system is decentralized, therefore a lot of bureaucracy is involved. CAR-T centres are a perfect example; with the many referrals and costly treatments that are needed the process does not flow as smoothly as it should and that is something that we still need to work on. This relates not only to CAR-T but to all innovative therapies.

New Models of Industry/ Patient Interaction

Karin Blumer

DIRECTOR GLOBAL PATIENT ENGAGEMENT, NOVARTIS ONCOLOGY

There is a lot of room for improvement in the way we talk to, and about, patients. This will allow not only our actions, but also our language, to become more patient-centric. We need to speak to patients in a language that is understandable, as far as it complies with laws and regulations, because we must carefully strike a balance between legitimate simplification and accuracy.

Additionally, many of the professional patient organisations nowadays are extremely well ver-sed in the science. When we invite patient organisations to review our clinical trial protocols to ensure that they are sufficiently patient-centric, for example, they understand the science perfectly. However, the ultimate recipient of our messages is not only the patient advocacy groups but the actual patients and we need to become better at communicating with them. Moreover, we need to seek dialogue with the authorities on jointly working on regulations that allow for more patient-centric language.

Again, paediatric oncology is a good example. A child will not understand a 40-page informed consent sheet, but – as we agree that children, depending on their age, should be able to grasp what is happening to them – we need to work with patients and caregivers to develop material that is understandable to children.

Melanie Croce-Galis

DIRECTOR, US PATIENT ENGAGEMENT, ONCOLOGY, NOVARTIS

There must be more conversations between advocacy groups and pharma, and between patients and pharma. Novartis is recognizing this in our new strategy towards patient engagement. Patient engagement is a two-way street. I spend a lot of time trying to learn about what patients want to know and what kind of gaps there are with patient needs. We are listening to patients, answering questions, and soliciting feedback that we can internalize to help make their journey better.

Advocacy groups are critical partners in this journey. I have the utmost respect for our US advocacy partners. They take on a huge role in patient and provider education, as well as patient support. We work very closely with our partners to understand and support their priorities, as they talk to patients every day and know best how to help.

At the same time, we can’t forget that there are many, many patients who aren’t connected to advocacy groups. The inequity in the US plays into this question. As the COVID-19 lockdowns showed, many people are isolated and without sufficient internet access, bandwidth, or other resources to take advantage of webinars or other telehealth opportunities. From an equity perspective, it is very important for us to be diverse in who we work with and make sure we are reaching all patients and helping our advocacy partners do the same.

Angeline Ho

COMMUNICATION & PATIENT ADVOCACY LEAD, ONCOLOGY CELL & GENE THERAPY, ASIA PACIFIC CLUSTER, NOVARTIS

It is important to use a different model of patient engagement that is more suited to the needs and unique values of patients in Asia. Key topics to consider include the multi-racial, multi-lingual and multi-cultural context in Asia, understanding the impact of culture on health-seeking behavior, considering values like filial piety, modesty in attire, respect for seniors, respect for authority and the issue of “face”. For example, in western cultures, more emphasis may be placed on a patient’s autonomy. In contrast, in Asia, seniors with cancer may not even know the diagnosis, as their family members may have requested the doctor not to reveal the diagnosis to their loved ones. Patient engagement models should be based on local patient insights from their respective cultures. It is not a one-size-fits-all approach.

Christian Conrad

SENIOR PATIENT ENGAGEMENT MANAGER, NOVARTIS ONCOLOGY GERMANY

In essence patient engagement and patient advocacy is about talking and listening to the patients and getting their insights. These insights are not limited to the collection of data but are more about trying to understand the patient’s perspective. This is really important for Novartis and our commitment to patients and caregivers; the company tries to include the patient community’s perspective in all of its work and be very transparent. In my role, I talk to patient organizations and patient advocacy groups to get their perspectives, learn what moves them, and figure out what could help them in their journey.

When I talk to individual patients that are not a part of any patient organization, they are always happy to receive information and have a guide during the process they are going through. On the other hand, patient organizations generally have a stronger awareness of the political landscape, so they bring initiatives and have physicians or medical experts on their side, as community consultants. It does change how they interact with me.

For example, a patient with a haematological disease like lymphoma or leukaemia has an acute need and is supported by their caregivers or relatives, which is something we must always take into consideration. Therefore, we make sure to include the caregivers and the relatives in the discussion, and not only the patients or physicians. However, when we talk about the same subject with a patient organization the focus is more on strategy and the overarching goal. 

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