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.
ObjectivesPatient lead users can be defined as patients or relatives who use their knowledge and experience to improve their own or a relative’s care situation and/or the healthcare system, and who are active beyond what is usually expected. The objective of this study is to explore patient lead users’ experiences and engagement during the early COVID-19 pandemic.DesignQualitative in-depth interviews with a cross-sectional time horizon.SettingThe early COVID-19 pandemic in Sweden, from 1 June through 14 September, 2020.ParticipantsA total of 10 patient lead users were recruited from the Swedish patient lead users (spetspatient) network. All participants were living with different long-term conditions and matched the definition of being patient lead users.ResultsWe found that during the early pandemic, patient lead users experienced that they no longer knew how to best manage their own health and care situations. On an individual level, they described an initial lack of knowledge, new routines, including a change in their health and an experience of people without a disease being in the same situation as them, for a while. On a systemic level, they described a fear of imminent unmet-care backlogs and decreased opportunities for sharing patient perspectives in care organisation, but also described increased networking.ConclusionsPatient lead users can be seen as an emerging community of practice, and as such could be a valuable resource as a complementary communication channel for an improved health system. The health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic.
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