Priorities of patients, caregivers and health‐care professionals for health research – A systematic review

Abstract

Background Based on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance. Objective This article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used. Search strategy Three electronic databases were searched on 22 May 2018. The search was not limited to any time period or language. Inclusion criteria The included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem. Data extraction and synthesis The 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme. Main results The priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods. Discussion and conclusions This review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.

Engaging veteran stakeholders to identify patient‐centred research priorities for optimizing implementation of lung cancer screening

“…Our finding indicated that patients and researchers/doctors may have very different perspectives when it comes to illness. This is consistent with published comparisons of participant priorities for research with the research that is actually performed 33–36 . For example, for health professionals, their lens was usually narrowly focused on the disease itself and treatments.…”

“…This is consistent with published comparisons of participant priorities for research with the research that is actually performed. [33][34][35][36] For example, for health professionals, their lens was usually narrowly focused on the disease itself and treatments. For patients, their wide-angle lens took in the whole of their lives, of which disease was one small part.…”

Forschungsprioritäten in der physiotherapeutischen Forschung in Deutschland – Eine systematische Analyse von Publikationen der physioscience der letzten 10 Jahre

“…Dieses Ergebnis zeigt, dass es für die meisten Gesundheitszustände, die physiotherapeutisch relevant sind und erforscht werden, entsprechende gesundheitszustandsspezifische Forschungsprioritäten gibt, an denen sich die Forschenden orientieren könnten. Mehrere aktuelle Übersichtsarbeiten belegen die zunehmend steigende Zahl an Forschungsprioritäten für unterschiedliche Erkrankungen und Personengruppen [1,6,32]. Levelink et al [6] z.…”

“…Mehrere aktuelle Übersichtsarbeiten belegen die zunehmend steigende Zahl an Forschungsprioritäten für unterschiedliche Erkrankungen und Personengruppen [1,6,32]. Levelink et al [6] z. B. berichten über 34 Publikationen, an denen Patient*innen, Pflegekräfte und Angehörige der Gesundheitsberufe intensiv beteiligt waren.…”

What do end-users want to know about managing the performance of healthcare delivery systems? Co-designing a context-specific and practice-relevant research agenda

“…In the healthcare field, involving end-users in research priority-setting is increasingly recognized as a best practice [ 6 , 7 ]. The lived experiences of end-users, such as patients and clinicians, can enhance the quality and relevance of research [ 8 ] and address criticism that most clinical research is “nonuseful” [ 9 ].…”