Empowering Patients on Clinical Trials Day and beyond

Happy Clinical Trials Day! Today, as we commemorate the remarkable contributions of clinical research to healthcare innovation, let’s journey back in time to explore the roots of clinical science. In 1747, aboard a British naval ship, James Lind conducted a groundbreaking trial to tackle scurvy, a scourge of sailors on long voyages. Through meticulous observation and experimentation, Lind discovered the efficacy of citrus fruits in treating the disease, marking a pivotal moment in medical history.

It is considered the world’s first controlled clinical trial, yet, the pursuit of improved healthcare stretches far beyond Lind’s era. Across civilizations, from ancient Egypt to medieval Europe, individuals have sought remedies to alleviate suffering and enhance well-being. This rich tapestry of human ingenuity underscores our enduring quest for better health.

Fast forward to the present day, and the spirit of discovery continues to drive clinical research forward. At Galapagos, we stand at the forefront of this endeavour, committed to empowering patients and advancing medical science. We talked to Heidi Müller, Head of Patient Advocacy at Galapagos, to understand how her team contributes to give patients the tools to discuss their health knowledgeably and with confidence.

Galapagos (G): Why is patient empowerment important in clinical research, particularly on Clinical Trials Day?

Heidi Müller (H): At Galapagos we strongly believe that patient empowerment leads to better health and wellbeing overall. When patients are empowered with knowledge and understanding of clinical trials, they can actively participate in decision-making processes regarding their health.

There are many elements which influence this, from their physician’s approach to the patient materials’ language and layout. It’s my belief that every stakeholder in the process needs to take their responsibility in empowering patients.

G: How do you prioritize patient empowerment in clinical trials?

H: We prioritize patient empowerment through various initiatives, starting with clear and accessible communications, and by providing our colleagues with guidelines to help them write and design patient materials in clear, understandable language and visuals.

In our industry, we often talk about ‘Informed consent’. This is a document which trial participants sign, and it is like giving their green light for study participation after knowing all the details. It’s when someone understands the risks, benefits, and alternatives of a medical treatment or procedure, and agrees to it voluntarily. It’s a way of making sure people are fully informed and have the power to make decisions about their own health .

So we make sure that our informed consent processes are transparent and easy to understand, empowering patients to make informed decisions about their participation to a trial.

Additionally, we provide educational materials to the public, such as our “Discussion Guide for Patients” to help individuals navigate conversations with their healthcare providers about clinical trial participation. Finally, we have our clinical trials portal, centralizing all educational materials about clinical trials.

G: Health literacy is an important element in your strategy to enable patient empowerment. Would you mind explaining what it entails?

I don’t want to get too technical, but there is individual and organizational health literacy. On an individual level, health literacy refers to the capacity each person possesses to access and effectively utilize health-related information. It’s about more than just understanding medical terms; it’s the ability to navigate through a sea of health information to make informed choices that promote and sustain good health.

On the organizational front, health literacy extends beyond individual capabilities. It pertains to the degree to which organizations facilitate equitable access to health information and services. This means ensuring that information is clear, understandable, and readily available so that individuals can make informed decisions not only for themselves but also for others under their care. It’s our responsibility, along with healthcare providers, regulators, and other stakeholders, to ensure that health information is clear, accessible, and easy to understand for everyone.

Studies show that everyone prefers clear health materials, regardless of their level of education, profession, or experience. Clear materials are especially important for people who are more likely to have low health literacy, such as those with a low income or education, mental illness, or elderly. However, everyone has low health literacy at certain times – due to stress, tiredness, or unfamiliarity with a topic.

G: It may sound banal, however why does that matter?

According to the European health literacy survey, about half of those surveyed (47%) have insufficient or problematic health literacy. I was shocked by that number. Think of the impact this has on everyday health-related decisions, such as understanding how to take the correct dose of a medicine, or knowing when and how to get children vaccinated.

Improving health literacy is literally helping people to live healthier lives. It sounds simple and straightforward, but it is not.

G: Viewing Health Literacy can make a huge difference for people’s health and wellbeing, one could say this is also a matter of equality?

I would say no, because we believe it’s about health equity. To understand this, you first have to understand the difference between equality and equity. Equality means giving everyone the same thing regardless of their background. Equity means giving people what they need to reach their best health. Let me illustrate this with an example.

Equality means giving everyone the same opportunity, like letting people equally access the fruit in a tree. But if one person is smaller and can’t reach the fruit despite having access to the tree, it might be equal but not fair.

Equity is about fairness. It’s like giving the shorter person a boost so they can reach the fruit too. In health literacy, it means providing information in a way everyone can understand, not just a trained physician. It means providing the exact resources people need to be as healthy as possible. Health literacy strategies address equity by ensuring a material meets each audience’s specific cultural, language, environmental, and historical needs and priorities.

G: Ok, that makes sense! Can you share an example of how our company promotes health literacy among patients?

H: Absolutely! One way we promote health literacy is by providing educational resources in multiple formats, including written materials, videos, and interactive tools. For instance, our website features informative articles and videos that explain the clinical trial process in simple terms.  We have just organized our first Patient Partnership Day where we hosted over 40 patient organization to co-create clinical research related topics, such as ‘Transparent communication to patients’.

G: How do you envision patient empowerment evolving in the future of clinical research?

H:  Although I am very proud of what we achieved so far at Galapagos, there’s so much more we can do. Patient empowerment in clinical research should become the new normal. Ultimately, my hope is that our clinical research reaches many more patients, regardless their skin or background, and can help them feel empowered to take care of their own health.

Our commitment to strong partnerships with patient advocacy groups and community organizations ensures that patient voices are heard and valued throughout each step of the clinical research process.

G: Thank you for the conversation, Heidi, very insightful. Here’s to informed decisions, meaningful collaborations, and a brighter future for healthcare innovation!