Patient-driven innovations reported in peer-reviewed journals: a scoping review

Background Awareness of patients' innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature. Objectives The objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals? Eligibility criteria We used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of 'patient driven' to focus on the role of patients and/or family caregivers. The search was limited to years 2008-2020. Sources of evidence Four electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies. Charting methods Data from the included articles were extracted and categorised inductively. Results A total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, 'Do-It-Yourself Artificial Pancreas System' and the online health network 'PatientsLikeMe', were the subject of half of the articles. Conclusions Peer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators' research while being mindful of taking over the work of the innovators themselves.

Automated summary

The number of peer-reviewed publications on patient-driven innovations is increasing, with a focus on high-income countries. The "Do-It-Yourself Artificial Pancreas System" and the online health network "PatientsLikeMe" are popular topics of research. There is an important opportunity for researchers and clinicians to support patient innovators' research, while being mindful of not taking over their work.