Patient and public involvement in the development of clinical practice guidelines: a scoping review

Abstract

ObjectivesOrganisations that develop clinical practice guidelines (CPGs) encourage involvement of patients and the publics in their development, however, there are no standard methodologies for doing so. To examine how CPGs report patient and public involvement (PPI), we conducted a scoping review of the evidence addressing the following four questions: (1) who are the patients and publics involved in developing the CPG?; (2) from where and how are the patients and publics recruited?; (3) at what stage in the CPG development process are the patients and publics involved? and (4) how do the patients and publics contribute their views? We also extracted data on the use of PPI reporting checklists by the included studies.DesignWe used the methodology developed by Arksey and O’Malley and refined by the Joanna Briggs Institute. We searched PubMed, Embase, CINAHL and PsycINFO, websites of national guideline bodies from the UK, Canada, Australia and the USA, and conducted a forward citation search. No language, date or participant demographics restrictions were applied. Data were synthesised narratively.ResultsWe included 47 studies addressing 1 or more of the 4 questions. All included studies reported who the patient and publics involved (PPI members) were, and several studies reported PPI members from different groups. Patients were reported in 43/47 studies, advocates were reported in 22/47 studies, patients and advocates reported in 17/47 studies, and general public reported in 2/47 studies. Thirty-four studies reported from where the patients and publics were recruited, with patient groups being the most common (20/34). Stage of involvement was reported by 42/47 studies, most commonly at question identification (26/42) and draft review (18/42) stages. Forty-two studies reported how the patients contributed, most commonly via group meetings (18/42) or individual interviews. Ten studies cited or used a reporting checklist to report findings.ConclusionsOur scoping review has revealed knowledge gaps to inform future research in several ways: replication, terminology and inclusion. First, no standard approach to PPI in CPG development could be inferred from the research. Second, inconsistent terminology to describe patients and publics reduces clarity around which patients and publics have been involved in developing CPGs. Finally, the under-representation of research describing PPI in the development of screening, as opposed to treatment, CPGs warrants further attention.

Die Beteiligung von Patient*innen an der Entwicklung von Leitlinien in der Klinischen Medizin. Ein selektiver Ländervergleich in narrativer Übersicht

“…Das besagt nicht unbedingt etwas über die Realität patientenorientierter Medizin in der Entwicklung von LL, kann aber erste Hinweise darauf liefern, welche Standards, Maßnahmen und organisatorischen Voraussetzungen in verschiedenen Ländern hierfür als wichtig erachtet werden. Ausgewählt für diesen Vergleich wurden Länder, die bei einer Suche in PubMed/MedLine mittels der zwei einschlägigen Schlagwörter "Guidelines as Topic" [Mesh] AND "Patient Participation" [Mesh] die mit Abstand meisten Treffer erzielten und die ebenfalls in anderen, einschlägigen Übersichten ausgewählt wurden [18,19]: das Vereinigte Königreich (UK), die USA, Kanada und Australien. Dabei werden hier -im Sinne eines narrativen Reviews -vorzugsweise Informationen aus dem jüngsten öffentlich zugänglichen Inhalten der entsprechenden Websites und aus Links zu LL-Entwicklungshandbüchern extrahiert.…”

Tinnitus Guidelines and Their Evidence Base

“…Considering that the final goal of guidelines is a better treatment of patients with tinnitus, it is essential to understand patient values better, wishes and goals related to their clinical management. Even though organisations that develop clinical practice guidelines encourage the involvement of patients and the public in their development, there are no standard methodologies for doing so [104]. A trial could be performed to develop guidelines based on evidence-based medicine and clinical experience, with and without patient involvement, and verify whether these guidelines would be similar.…”

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