Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts’ and Citizen-Patients’ Perspectives

BACKGROUND Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. OBJECTIVE This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. METHODS We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. RESULTS Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. CONCLUSIONS This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed.