Public and Patient Involvement in Tinnitus Research

Public or patient involvement has only recently been established in tinnitus research. Citizen science (CS), community science, or participatory research are modes of scientific research which involve members of the general population with different levels of participation. CS covers a wide range of stakeholders, including patients, healthcare professionals, basic and clinical researchers, industry, governmental bodies, and funders. In this chapter, we aimed at systematically identifying current CS efforts and challenges in tinnitus research. To this day, CS in tinnitus has been almost exclusively performed in British academia. Beyond that, CS projects have often been initiated by charities or self-help organisations like the British Tinnitus Association (BTA) or Tinnitus Hub. Current challenges identified are the heterogeneity of tinnitus, misalignment between academic and patient interests, dissonance between stakeholders, and lack of academic incentives. We therefore recommend to better value the concept of CS, improve its evidence base and evaluation, further education and awareness, consider more diversity and inclusion, involve patients in all levels of research projects, and finally, encourage the use of new technologies including the internet and social media. Furthermore, transnational organisation and harmonisation could be achieved by raising awareness through scientific publishing, conference activities, and public dissemination.