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

Marie Dahlberg; Madelen Lek; Moa Malmqvist Castillo; Ami Bylund; Henna Hasson; Sara Riggare; Maria Reinius; Carolina Wannheden

doi:10.1136/bmjopen-2022-071363

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

BMJ Open. 2023 Jun 1;13(6):e071363. doi: 10.1136/bmjopen-2022-071363.

Authors

Marie Dahlberg¹, Madelen Lek², Moa Malmqvist Castillo², Ami Bylund², Henna Hasson^{2

3}, Sara Riggare⁴, Maria Reinius², Carolina Wannheden²

Affiliations

¹ Department of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm, Sweden marie.dahlberg@ki.se.
² Department of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm, Sweden.
³ Unit for Implementation and Evaluation, Center for Epidemiology and Community Medicine, Region Stockholm, Stockholms Lans Landsting, Stockholm, Sweden.
⁴ Participatory eHealth and Health Data, Department of Women's and Children's Health, Uppsala Universitet, Uppsala, Sweden.

Abstract

Objectives: The 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.

Methods: We 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.

Results: In 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.

Conclusions: The 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.

Keywords: PUBLIC HEALTH; QUALITATIVE RESEARCH; Quality in health care.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Caregivers
Delivery of Health Care
Humans
Patients
Periodicals as Topic*
Self Care