Research priorities in health communication and participation: international survey of consumers and other stakeholders

Abstract

ObjectiveTo identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy).SettingInternational.ParticipantsWe included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both).DesignSurvey.MethodsWe invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes.ResultsParticipants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals.ConclusionsConsumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals’ communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

Citizen Science Models in Health Research: an Australian Commentary

“…The lack of standard definitional boundaries of what constitutes digitally-enabled public participation in health research relates to a diversity of approaches, e.g. citizen science, community-based participatory research (CBPR), action research, patient and public involvement (PPI), and crowdsourcing, among other approaches [15,23,76].…”

Engaging young African American women breast cancer survivors: A novel storytelling approach to identify patient‐centred research priorities

“…First, it contributes to the literature on providing a detailed process to address research priority setting for YAABCS, as the literature suggests that priority setting between researchers and stakeholders may improve research relevance and value. 11,12 Second, we use an innovative patient-centred storytelling approach to effectively engage YAABC survivors. Storytelling is deeply rooted in African American culture.…”

Research priorities for childhood chronic conditions: a workshop report

“…Specifically, this was expressed in terms of access to educational support, social acceptance and life and community participation. The focus on being equipped for self-management, partnership with clinicians and being empowered to make informed decisions about treatment were reflected in the research priorities, which are similar to those identified in a survey of stakeholder priorities for communication and participation 26. The research questions and themes focused on parents/caregivers were primarily about strengthening ability to cope and impact on families.…”