Christian Pfeuffer reflects on the start of his Sciana journey, his lived experience and his vision for inclusive public health leadership
Christian Pfeuffer is a digital health strategist and patient advocate with over five years of experience contributing to patient-centred solutions in healthcare. Driven by a vision to integrate innovative technologies with patient needs, he combines academic expertise with professional experience.
Holding a master of science in business administration, his research focused on "Value Co-Creation through Patient Involvement within Virtual Health Solutions." Christian has worked with the pharmaceutical and medtech industry, fostering collaborations that improve healthcare systems and outcomes through strategic and operational excellence.
Since 2018, Christian has been actively involved in patient advocacy, contributing to SMA Europe, EURORDIS, and DGM. His work includes roles in HEU-EFS and participation as a speaker at international events such as ICHOM. These experiences underline his commitment to integrating patient perspectives into healthcare innovation. Living with spinal muscular atrophy (SMA) has provided him with a unique understanding of healthcare challenges. Christian is a member of Sciana's seventh cohort.
This interview has been edited for brevity and clarity.
Sciana Network: What encouraged you to apply for Cohort 7? What are you looking to gain from this experience?
Christian Pfeuffer: Sciana: The Health Leaders Network is a great opportunity because, on the one side, it's networking with different stakeholders who have a vast expertise and interest in public health […] On the other side, it's also searching for a bold challenge. And I think the collaboration of stakeholders with varying expertise and differing ways of working, considering the overarching goals of scarcity and public health, is a really interesting approach. And I'm excited to see what comes out, on what challenge and what project we will align and what the outcome will be.
SN: With the first meeting of Cohort 7, what perspectives are you bringing from your lived experience and advocacy work that you believe are often underrepresented in strategic discussions centred around public health?
CP: In terms of public health and patient advocacy, I think I bring a unique experience. I don't want to consider myself having a unique point of view, but well, it is what it is. I have this lived experience with a rare chronic condition. The challenge when it comes to patient advocacy and involving patients in strategic decisions on the one side, and, on the other side, to address them in public health, is the general empowerment of the public health.
It's about population health […] the general topic is about how to engage people and to advocate for health. Within a condition, it is not only about the empowerment for health but also the empowerment to live and advocate for or with this condition. This expertise can be unique, but also must be thought through. Eventually, it is not limited to one condition but to a broader disease field area. This is a unique value for the patient that we can bring in, and for this, we must be empowered.
SN: What are you most eager to learn from your co-fellows about this cohort?
CP: I'm most eager about how, not only in Germany, but in Switzerland and UK, how public health is approached, what are the topics they are working on, and then eventually how we can find a gap, how we can walk the talk, how we basically address scarcity, not only on [a] national [level], but a transnational level.
SN: Your research and advocacy emphasise the value of co-creation through patient involvement in virtual health solutions. What are those practical strategies you have found most effective for enabling and empowering patients to become true co-creators in digital health innovation?
CP: It depends on the product which gets the method eventually […] I think patients can bring in [at] every stage a value, but not necessarily the value of what is aimed for. When it's about technical development, [a] patient can talk for sure, but there's no need to talk when it is about the technical implementation.
It's about the first step, the unmet need, the identification of it, and then eventually the user experience. I think the best approach is to have an iterative development with this specific patient group and also align on a common goal and make an expectation management: one will not develop and change over a short period, but time is needed […] For this, patients need understanding. All sides need understanding.
SN: What are the barriers that still need to be addressed by stakeholders in terms of value co-creation through patient involvement?
CP: There's a knowledge gap; there's a lack of understanding of the value a patient can bring for development, but there's also a misunderstanding regarding the patient, like having one or two patients [does] not necessarily represent the whole patient population. This is the one barrier from one side, and from the patient side, it's about empowerment.
Just talking about the patient journey and the perception is not enough. It is about how to apply this lived experience [to] the specific issue [or] challenge we are facing.
SN: Drawing from your experience with SMA Europe and EURORDIS, what are some systemic barriers you encountered in embedding patients' voices into healthcare decision-making?
CP: [For] systemic barriers, it is fragmentation. This is in the nature of how it is on a European level. Decisions are not necessarily made on a European level, but on a country level [and] on a nation level. This is great; this is independence, and it is needed. That's how Europe works. But this fragmentation also results in a fragmentation of needs.
So, in Switzerland, the UK, Spain, Greece, or Germany, there are different patient needs when it comes to access to medication or to treatment just due to the nature of how it is reimbursed [and] how the national healthcare system works. This is not only limited to the medical aspect but also to the social aspect: how social care is delivered, how participation is enabled. There's a systemic challenge that the voice of the patient differs by country, and it's hard to unify.
SN: In solving that problem, how do you think leaders can better integrate this perspective at a structural level?
CP: Awareness. I mean, it is about awareness of marginalised and vulnerable groups and their needs. And it's about prioritisation. What do we need? Do we need to cut costs? Or do we have to live or enable inclusion and diversity? And this is the challenge, or also an area we face. So, what is more important? Is it about cost efficiency, or is it about diversity?
SN: Given your cross-sector experience, what opportunities do you see for multi-stakeholder partnerships to address population health challenges?
CP: The biggest enabler of population health is digitalisation, and digitalisation is a robust word […] This now depends on the stakeholder group we are speaking with or about. So, in a clinical context, the automatisation of data or workflows it is a big plus […] On the other side, when we speak about public health, it is [an] overarching topic which must be addressed by development of the society.
I think it is challenging to address everyone in our society, but this should be the aim that no one is left behind. This can be addressed, I guess, with digital solutions and industry. Private-public collaborations play a tremendous role in there […] Everyone has a phone, for example, so digital applications might apply for telemedicine in rural areas. Then we have other challenges with access to the Internet and connectivity, but I guess the collaboration [in a] public and private partnership is a great approach to face this challenge of constrained resources.
SN: Cohort 7 focuses on systems leadership for population health. What leadership traits do you believe are most essential when prioritising health interventions for diverse populations?
CP: It's about empathy and social competencies. When we are speaking about prioritising health interventions—I don't want to say triage—but we were speaking about availability of health interventions for some and for others not. This is the challenge we face with limited money available […] Empathetic leadership, involving the decision-makers on [different levels], must provide an understanding of why […] one topic was prioritised over another one.
I see the citizens as a stakeholder group, which must be made aware of not necessarily the pathway to this decision-making, but must be made aware why [a] decision was made […]
SN: What motivates you to do the work you do?
CP: There are many minority groups, there are many marginalised groups. The world is unfair, and a basic need of people is health […] For society, I want to improve access and quality of care, and I would see the vision to foster that by developing the society and the people with their health education […] For me personally, it's just about improving.
