Professor Joseph G. Rogers is the President and Chief Executive Officer for the Texas Heart Institute, Houston, USA and a member of our stakeholder group. He is an internationally recognized and widely published thought leader in heart failure, heart transplantation, and mechanically assisted circulation. We asked Professor Rogers to share his perspective on conducting research into integrated palliative care in heart failure, his thoughts as a clinician on the importance of having our PPI members involved and his experience of being involved as a stakeholder on the PalliatHeartSynthesis project so far.
The Palliatheartsynthesis project is an important initiative to advance knowledge in the burgeoning intersection of palliative care and heart failure. While integration of palliative care concepts into the management of heart failure is logical and appropriate in light of the associated morbidity and mortality, these principles have not been broadly adopted by clinicians. From my perspective, this is partly related to a
“lack of knowledge about the benefits of this holistic, patient-centered approach that addresses often overlooked aspects of the patient journey.”
Palliatheartsynthesis is working to fill an important data void by developing a body of knowledge that will inform and guide practitioners about the benefits of palliative care integration.
“Another vitally important aspect of this project is the investigative team that includes those living with heart failure – our patient and public involvement members.”
As we move forward in clinical trials, gaining insights from our patients and their families will be an increasingly important part of understanding disease process, progression, and the value of interventions. The patient voice is a necessary (and long-overlooked) component of clinical investigation.