Listening to patients’ voices
“Patients are able to describe their symptoms and classify the effect an illness has on their lives far better than anybody else. That’s why it’s so important for us to engage with patients early in the drug development process – to understand their specific experiences and gain insights into unmet needs.”
Sharp pain, aching pain, severe pain or moderate pain: It can be very difficult for patients to describe their specific symptoms. This can lead to frustration and misunderstandings between patients and physicians, because the language they use is subjective and open to differences in perception. Since pain is so hard to measure and describe, patients often place greater importance on explaining how pain affects their daily routine – from driving a car or walking to the shops through to sleeping at night. That’s why it’s crucial for health care professionals and pharmaceutical companies to listen to patients and integrate their insights into the development of new medicines.
At Grünenthal, we’re committed to giving patients opportunities to speak up – and be heard. Our research and development teams are in regular contact with patients and patient advocacy groups to learn about their experiences of the specific symptoms of their illnesses. By listening closely, we’re able to gain a much better understanding of what new medicines need to offer so that patients are able to enjoy improved quality of life. Alongside this, our teams share their leading scientific knowledge with patients to expand their understanding of their illness.
“Everything we do is ultimately about improving patients’ quality of life. That’s why it’s essential that patients and patient advocacy groups are able to contribute their insights into the development of solutions – and it’s why we’re absolutely committed to maintaining open and continuous dialogue.”
On September 11 and 12, experts from Grünenthal’s innovation teams met leaders from 17 patient organisations for our annual US Patient Day. The event was the seventh meeting of its kind and aims to gather valuable insights that empower our research and development programs to create truly life-changing treatments for pain patients.
This year, the participants focused on the progress two projects had made since they were initiated during last year’s event. The first one looks into ways of enhancing how patients communicate their pain experience to health care professionals, researchers, family members and other patients. It aims to create a set of visual representations of pain that can support patients in describing what they feel. The second project focuses on creating a set of recommendations for how to assess chronic pain. The project is based on a survey that includes the feedback from more than 3,000 pain patients: It clearly shows that the questions currently used to assess patients’ experiences of pain are not the most relevant from a patient point of view. As a result, we’re working together with patient advocates to create pain assessments that are based on the specific needs of patients. Ultimately, we want to create a whitepaper and advocate to replace existing pain scales – which were developed without input from patients – and introduce a common language for talking about pain in a holistic way.
Through open dialogue and discussion, we identified concrete action points that will help drive these projects towards successful outcomes for patients. Above and beyond the whitepaper, we will continue to explore ways of standardising the terminology used to describe pain. Taken together, these actions aim to encourage a better understanding between patients and health care professionals to ultimately allow for a more targeted treatment.
We’re grateful to everybody who participated in this year’s US Patient Day event. The two-day meeting supports our commitment to integrating patients’ voices into every step of our research and development process. Building long-term relationships with patient groups is a key element in our search for innovations that improve patients’ quality of life. We look forward to further opportunities for dialogue – and would be happy to hear from patients around the world who share our passion for collaboration and open discussion.