TY - JOUR T1 - Patient engagement in health technology assessment (HTA) and the regulatory process: what about rheumatology? JF - RMD Open JO - RMD Open DO - 10.1136/rmdopen-2020-001286 VL - 6 IS - 3 SP - e001286 AU - Maarten de Wit AU - Francis Guillemin AU - Sabine Grimm AU - Annelies Boonen AU - Bruno Fautrel AU - Manuela Joore Y1 - 2020/11/01 UR - http://rmdopen.bmj.com/content/6/3/e001286.abstract N2 - The call for person-centred care and shared decision making goes beyond the consultation room of the patient and health professional.1 On national as well as international level, patients contribute to health innovations and policy making.2 There is an increasing emphasis on patient engagement in identifying unmet needs and the development and subsequent authorization of effective treatments to ensure that they are based on robust input from patients reflecting their preferences, values and priorities.3 Although rheumatology is one of the leading specialties in collaborative research,4 implementation of patient engagement in health economics lags behind. This may be due to (a) the difficulties lay people experience in understanding the context of health technology (HTA), its methods for patient preference elicitation, constructs such as Quality-Adjusted Life Years (QALYs), Disability-Adjusted Life Years (DALYs) and Incremental Cost Effectiveness Ratios (ICERs), but also to (b) the complex role of patients when deciding on healthcare resource allocation. However, there is no reason to assume that patient and public involvement (PPI) in HTA is neither feasible nor desirable.5 On the contrary, especially in times of economic crisis and radical health policy reforms, patients are confronted with decisions that could affect the accessibility and affordability of safe and effective treatments.6 It is the role of patients to ensure that research, licensing and reimbursement decisions align with patient values. As key stakeholders, they not only have the right to be involved, they also own knowledge and experiences that can guide the development of new interventions, the assessment of their utility and the conditions under which market authorization is warranted. Listening to patients and engaging patients as partners right from the start and throughout all stages of HTA and the authorisation process, will reduce the waste of resources,7 enhance the implementation of patient-centred care … ER -