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

Abstract

BackgroundAwareness 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.ObjectivesThe 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 criteriaWe 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 evidenceFour 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 methodsData from the included articles were extracted and categorised inductively.ResultsA 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.ConclusionsPeer-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.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

“…Of the 96 publications included in the scoping review,11 13 publications (14%) contained no information that was relevant to the objectives of this study and were therefore excluded. Thus, our analysis included 83 publications, reporting on 21 patient-driven innovations 18–100.…”

“…Health innovations have been defined as ‘new or improved health policies, systems, products and technologies, and services and delivery methods that improve people’s health and well-being’ 10. In this paper, we use the term patient-driven innovation to describe health innovations that have been initiated and further developed by patients or informal caregivers 11…”

Translational Research and Communities

“…Although this might seem like an unrealistic goal given the technical and computational complexity of translational methods in big health data research, developing infrastructure that enables communities to ask and answer their own translational research questions is not as far‐fetched as it might first appear. Already, communities are contributing to and leading data‐intensive research in many fields, including environmental justice, 17 and evidence of patient‐driven innovation in translational health is increasing 18 …”

Barriers to Citizen Science and Dissemination of Knowledge in Healthcare

“…For example, a recent scoping review by Reinius et al (2022) focused on patient-driven innovation, using a broad definition of innovation and a narrow definition of patient driven, searching between 2008 and 2020 and finding 96 articles on 20 patient-driven innovations. (This of course would not include research that is not perceived as an innovation, which is highlighted in the limitations of Reinius et al's paper; therefore, this scoping review should not be used to assess the quantity or scope of success of citizen science work in healthcare.)…”