Transition Study of Biosimilar Infliximab in Patients with Inflammatory Bowel Disease

Abstract

Background: Social media are electronic communication tools with the potential to change how policy makers, healthcare professionals, researchers, patients and consumers manage and share digital information about safe and effective use of medicines. Methods: The EMA set up an ad hoc group with representatives from its Healthcare Professionals Working Party (HCPWP) and Patients and Consumers Working Party (PCWP) to reflect on the uses of social media (Social Media Topic Group [SMTG]). A piloted qualitative survey to map current practices and expectations regarding social media was sent by the SMTG to all 65 PCWP and HCPWP member organisations. Results: Responses were obtained from 28 organisations actively using social media and 3 member organisations not actively using social media. Six (22%) of 27 respondents declared a formal communications strategy. Ten (36%) organisations reported using social media for safety alerts and 9 (32%) for regulatory updates. Direct, rapid contact with target audiences was considered a major strength. Major concerns included that messages could be perceived as oversimplified or even misinterpreted due to content restrictions, leading to potential reputational risk; and no guarantee of safety alerts reaching target audiences, in part due to variations in uptake and choice of social media tools across the EU. Opportunities included providing ways for patients with a functional loss to engage in peer-support networks; raising awareness of clinical disorders and sharing best practices on their treatment; enhancing impact when lobbying policy makers to increase support for treatment of unmet needs. Conclusions: There was a consensus that effective use of social media by patient, consumer and healthcare professional organisations offers major potential health benefits but is not risk-free, with concerns about costs and potential threats from using social media. There is clear scope for evaluating cost-effective ways of using social media for health-related organisations to contribute to safe and effective use of medicines.