Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

Abstract

Objective Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. Methods A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories. Main results From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). Conclusions While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.

Successfully implementing a national electronic health record: a rapid umbrella review

“…Unlike a systematic review, an umbrella review also known as a review of reviews, compiles evidence from several research syntheses across different healthcare contexts and stakeholder groups 32 , 33 . Active collaboration with an expert panel of knowledge users facilitated the acceleration of the systematic review process 30 and to facilitate uptake and use of these findings by planners and decision-makers, the synthesized findings were also presented in a report format 34 .…”

“…Additionally, healthcare is a complex and adaptive system which needs to be recognized and acknowledged when attempting to replicate successes in another context 29 . The EHR programme in Ireland is also already underway and therefore, it’s critical that knowledge is generated to provide actionable and relevant key considerations in a timely manner aligned with the policy and decision-making cycles 30 . Therefore, the aim of this review is to identify and explore the key factors which promote a successful EHR implementation across healthcare settings, with active collaboration from key stakeholders in the Irish context.…”

Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

“…The research seminar itself was not accessible to patients with complex medical needs, thereby preventing them from being involved. A recent rapid realist review outlines 33 programme theories to assist with clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups . These relate to considerations required in the environmental and social planning; service provision; guidelines; financial measures; communication and marketing; and regulation and legislation, many of which may be applicable to improving inclusion in future involvement and events.…”

Feasibility cluster randomised controlled trial evaluating a theory-driven group-based complex intervention versus usual physiotherapy to support self-management of osteoarthritis and low back pain (SOLAS)

“…Since the completion of this trial, the importance of patient and public involvement (PPI) in research has become increasingly recognised in Ireland [36][37]. Therefore, the development of a revised recruitment pathway for a de nitive trial would warrant further PPI engagement to address barriers and optimise enablers to participation in the group-based class arm in particular [38][39][40].…”