A demand from the cardiac surgery and heart transplantation department of a French (Lyon) university hospital to adopt an ex-vivo perfusion system of human donor hearts was a chance to actively involve patients in our hospital-based health technology assessment (HB-HTA) process.
We selected an existing framework for patient involvement in HB-HTA and involved patients at two stages of the HB-HTA process: evaluation and dissemination. Firstly, we conducted a consultation-oriented workshop to gather patient perspectives on the introduction of the technology in our hospital, based on their significant experience of healthcare. Secondly, we organized an information-oriented workshop to communicate the HB-HTA results to the patients consulted, after the decision had been taken.
We modified the framework for patient involvement to suit the local decision-making context, the HB-HTA methodology, and the type of technologies assessed in our institution. Patients perceived the ex-vivo perfusion system as a promising technology to facilitate access to heart transplantation. They emphasized the importance of a tailored information provided to patients about the potential use of the technology in their healthcare trajectories, and suggested involvement of patients to facilitate its implementation in hospitals.
Modifying existing frameworks for patient involvement to fit specific local contexts should be encouraged, and has to address the need of timely information for decision-makers and patient recruitment issues. Decision to incorporate patient perspectives and experiences should be made on a project-by-project basis, and focus on innovative medical devices with expected significant impact on patient quality of life. Effective and transparent communication and prospective feedbacks from HB-HTA producers to patients are essential for a successful process.
Three patients with a lived experience of heart transplantation, or another transplant procedure, or more broadly procedures involving innovative medical devices (specialists) and two patients recruited for societal issues and legitimacy of a collective voice were involved (generalists).