In healthcare, from the development of medical devices to the provision of care, there is a widely held belief that healthcare systems know what patients want. Time and time again, this has been proven wrong. Now more than ever, it’s time for participatory healthcare – a growing trend internationally.
Radboud University Medical Centre in the Netherlands, has developed a robust approach to including patients, family, and careers into all of the innovation projects it undertakes, right from very start through its REshape Center for Innovation. With new technologies and the communication revolution accompanying them, patient engagement ranges from polling to videoconferencing, to social media and patient advisory boards.Some of the patient perspectives EXCITE International is interested in for its offerings includes patient perspectives in:
- Protocol development by EXCITE International for clinical trials, especially as these relate to appropriate outcomes, ethical considerations, weighing risks and benefits, and recruitment strategies;
- Access by patients to new heath technologies following evaluation by EXCITE International;
- As required, at the proof-of-concept phase of evaluation;
- All EXCITE International conferences, meetings, committees and publications; and
- Any other areas where EXCITE International may develop generic approaches to patient involvement in the development, testing, and access to new health technologies it is asked to evaluate.
About the Committee Chair:
Lucien Engelen is the founding director of the REshape Center for Innovation at the Radboud University Medical Center in Nijmegen, the Netherlands. He considers new technologies and their companion communication modes to be highly influential on the considerable challenges posed by the current state of healthcare around the world.
Since 2008, Lucien has assessed the intersection between technology and (patient) empowerment, how it is creating momentum for the delocalization of healthcare, the shift of (more) data into the hands of patients through technology, and how these developments will change health(care). As the initiator of the #patientsincluded charter, peer-developed to encourage the involvement of patients, family and informal careers in conferences, journals, government and research, Lucien strives for inclusiveness and actual co-creation from the get-go in all of his work. As part of his efforts, Lucien co-created – with the Netherlands Ministry of Health the Health Innovation School – a program to train future leaders in health care, that includes patients in its lectures, advisory committee and reviews.
In partnership with EXCITE International, the REshape Center is fashioning a Charter to determine the process for how EXCITE International can work to most effectively include patients. Following the Patients’ Charter, the evolving Patients Included Committee (#patientsincluded) will provide ongoing advice to EXCITE International to ensure that meaningful patient input occurs throughout each of its offerings, discussions, publications, and conferences. This international initiative is being led by Lucien Engelen, founder of #patientsincluded, which has gained rapid international recognition with organizations becoming accredited to become recognized with a #patientsincluded designation through the development and adherence to specific charters.
Commencing with a focus on the Netherlands, the EXCITE International’s Patients Included Committee (#patientsincluded) will rapidly grow to include all EXCITE International’s member countries, based on existing and new initiatives in this area.