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

Abstract

ObjectivesThe aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported.MethodsWe performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008–2020.ResultsIn total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration.ConclusionsThe patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients’ and informal caregivers’ daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.

Optimal innovation incentive strategies within the health crowdsourcing platform

“…A health crowdsourcing platform is a website that allows patients with rare ailments to disclose specific medical information to a crowd of medical experts (including specialists, other patients, and so on) who will submit their innovation solutions, with the accurate diagnostician getting a payment (Wazny, 2016). For example, PatientsLikeMe.com enables patients to share their personal health information and solutions within the platform so that peers with the same conditions can learn from others' experiences and improve their health outcomes (Dahlberg et al, 2023;Wicks et al, 2010). The PI platform has collaborated with prominent universities and MedTech firms in Europe (Copenhagen Business School, IESE Business School, Nova School of Business and Economics, and Technical University of Denmark) and the United States (MIT Bootcamps and Harvard Medical School) to establish the Bootcamp.…”