Active Patient Engagement in Palliative Research Projects at the German Heart Center of Charité
Palliative Care – Also for People with Heart Diseases
High-quality symptom management, empathetic conversations about disease progression, individual wishes and needs, active involvement of family members, psychological support, and social services to help organize optimal home care – this approach to palliative care has been shown to improve the quality of life for people with serious illnesses. While this is well-established in oncology, it remains rare in cardiology: Only a small percentage of people with heart disease in Germany ever receive palliative care.
Dr. Moritz Blum and his team at the German Heart Center of Charité (Deutsches Herzzentrum der Charité, DHZC) want to change this. As part of a project funded by the BIH Junior Clinician Scientist Program, the team seeks to identify the specific needs of people with heart disease when it comes to palliative care. To achieve this, the researchers are conducting structured interviews with patients, and the results will be further explored through a representative survey. In the next phase, a concrete care model will be developed based on the findings, placing the needs of people with heart disease at its core.
Better Research Through Active Patient Engagement
Throughout the entire process, the researchers work closely with patient representatives. Their insights and expertise are especially valuable for this project, says Moritz Blum: "In our study, we talk to patients about palliative care, unmet needs, suffering, and the end of life. These are challenging topics that require a great deal of sensitivity and careful planning to conduct the research interviews successfully. Our patient advisory board knows from personal experience how these individuals feel, what questions are on their minds, what works well, and what doesn’t. The patient perspective greatly enriches both the planning and conducting of our study."
Specifically, the study team meets regularly with the patient advisory board throughout the study to discuss upcoming decisions regarding the study conduct. The first workshop began with an introduction to the research process and an open discussion on the question: "What can patients contribute to the research process?" In the second workshop, the team prepared for the upcoming interviews and further developed an interview guide to structure the content and flow of the research interviews. In the next workshop, the first results from the interview analysis and ideas for designing palliative care services will be discussed collectively.
The researchers are fortunate to have found a highly dedicated partner organization in the transplantiert e.V. association. The association is made up of members who have undergone organ transplants, most often heart transplants. Based on their own experiences, these individuals are familiar with the everyday challenges of severe heart failure and can offer valuable insights. The collaboration with the association has been ongoing for over a year and goes beyond purely scientific exchange – for example, the research team attended the transplantiert e.V. regulars' table at a summer beer garden in June, where ideas for future projects were also developed.
In the End, Everyone Benefits – Researchers and Patients
Doctoral student Chiara Pfeffer, who conducts the study interviews as part of her doctoral dissertation, summarizes the collaboration: "We have received incredibly valuable feedback from the patients – sometimes even critical feedback – and made significant adjustments to our interview guide. Some things are simply not considered from a medical perspective. We, as the research team, benefit greatly from working with patients. And they, in turn, are happy that someone is finally reaching out to them and asking what they have to say. Because they have a lot to say."
The publication "Unmet needs of heart failure patients across the different domains of palliative care – a qualitative interview study" was awarded with the QUEST Award for Patient & Stakeholder Engagement.