Using social media research in health technology assessment: stakeholder perspectives and scoping review

• Published in: International journal of technology assessment in health care 2023-09, Vol.39 (1), p.e63, Article e63
• Main Authors: Holtorf, Anke-Peggy, Danyliv, Andriy, Huang, Li-Ying, Venable, Yvette, Hanna, Alissa, Krause, Annekatrin, Pierre, Miranda, Walsh, Donna, Silveira Silva, Aline, Lee, Sou-Hyun, Mattingly, T. Joseph
• Format: Article
• Language: English
• Subjects: Assessment; Best practice; Collaboration; Communication; Decision Making; Digital media; Disease; Ethics; Health Policy; Health technology assessment; Humans; Literature reviews; Participation; Patient Participation; Patients; Readership; Research methodology; Social Media; Social networks; Stakeholder Participation; Stakeholders; Technology assessment; Technology Assessment, Biomedical - organization & administration; User behavior; User generated content
• ISSN: 0266-4623; 1471-6348; 1471-6348
• DOI: 10.1017/S0266462323002593

The aim of this initiative was to examine collaboratively, in a multi-stakeholder team (health technology assessment (HTA) practitioners with patient involvement expertise, health technology industry, patient advocates, health policy experts, patient engagement experts), whether evidence generated through social media research (SMR) fills current information gaps relating to insights on specific aspects of patient experiences, preferences, or patient needs and delivers additional value to HTA. The framing of the project was done in a co-creative, deliberative multi-stakeholder process. Challenge and refinement happened through discussions with 25 independent stakeholders from HTA bodies, industry, academia, and patient advocacy. For critical themes identified during the framing phase, scoping literature reviews were performed including the state of methods and examples for the use of SMR in HTA. The framing and stakeholder discussions specified a set of expectations and requirements, and the scoping reviews revealed the current state of methods and usage of SMR in health-policy decision making. The project concluded that SMR can contribute new, relevant evidence to HTA. It is however recommended to evolve the science through defining best practices when planning, conducting, and using SMR and to conduct multi-stakeholder pilot SMR projects to address questions relevant to current HTAs and to validate and improve the proposed practices.