Priority populations' experiences of isolation, quarantine and distancing for COVID-19: protocol for a longitudinal cohort study (Optimise Study).

INTRODUCTION: Longitudinal studies can provide timely and accurate information to evaluate and inform COVID-19 control and mitigation strategies and future pandemic preparedness. The Optimise Study is a multidisciplinary research platform established in the Australian state of Victoria in September 2020 to collect epidemiological, social, psychological and behavioural data from priority populations. It aims to understand changing public attitudes, behaviours and experiences of COVID-19 and inform epidemic modelling and support responsive government policy. METHODS AND ANALYSIS: This protocol paper describes the data collection procedures for the Optimise Study, an ongoing longitudinal cohort of ~1000 Victorian adults and their social networks. Participants are recruited using snowball sampling with a set of seeds and two waves of snowball recruitment. Seeds are purposively selected from priority groups, including recent COVID-19 cases and close contacts and people at heightened risk of infection and/or adverse outcomes of COVID-19 infection and/or public health measures. Participants complete a schedule of monthly quantitative surveys and daily diaries for up to 24 months, plus additional surveys annually for up to 48 months. Cohort participants are recruited for qualitative interviews at key time points to enable in-depth exploration of people's lived experiences. Separately, community representatives are invited to participate in community engagement groups, which review and interpret research findings to inform policy and practice recommendations. ETHICS AND DISSEMINATION: The Optimise longitudinal cohort and qualitative interviews are approved by the Alfred Hospital Human Research Ethics Committee (# 333/20). The Optimise Study CEG is approved by the La Trobe University Human Ethics Committee (# HEC20532). All participants provide informed verbal consent to enter the cohort, with additional consent provided prior to any of the sub studies. Study findings will be disseminated through public website (https://optimisecovid.com.au/study-findings/) and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05323799.

Who is at the centre of what? A scoping review of the conceptualisation of 'centredness' in healthcare.

OBJECTIVES: We aimed to identify the core elements of centredness in healthcare literature. Our overall research question is: How has centredness been represented within the health literature published between 1990 and 2019? METHODS: A scoping review across five databases (Medline (Ovid), PsycINFO, CINAHL, Embase (Ovid) and Scopus; August 2019) to identify all peer-reviewed literature published since 1990 that focused on the concept of centredness in any healthcare discipline or setting. Screening occurred in duplicate by a multidisciplinary, multinational team. The team met regularly to iteratively develop and refine a coding template that was used in analysis and discuss the interpretations of centredness reported in the literature. RESULTS: A total of 23 006 title and abstracts, and 499 full-text articles were screened. A total of 159 articles were included in the review. Most articles were from the USA, and nursing was the disciplinary perspective most represented. We identified nine elements of centredness: Sharing power; Sharing responsibility; Therapeutic relationship/bond/alliance; Patient as a person; Biopsychosocial; Provider as a person; Co-ordinated care; Access; Continuity of care. There was little variation in the concept of centredness no matter the preceding word (eg, patient-/person-/client-), healthcare setting or disciplinary lens. Improving health outcomes was the most common justification for pursuing centredness as a concept, and respect was the predominant driving value of the research efforts. The patient perspective was rarely included in the papers (15% of papers). CONCLUSIONS: Centredness is consistently conceptualised, regardless of the preceding word, disciplinary lens or nation of origin. Further research should focus on centring the patient perspective and prioritise research that considers more diverse cultural perspectives.

Loneliness in older age: What is it, why is it happening and what should we do about it in Australia?

Loneliness is an important health issue facing older people due to its association with poor quality of life and poor health outcomes. This paper aimed to clarify key issues around loneliness among older adults and draw attention to innovative programs and the translation of emerging research into practice. Loneliness is a mismatch between a person's actual and desired social connections, experienced as negative emotions. Older adults are vulnerable to loneliness because of changes associated with ageing. As such, identifying as older is often seen as a burden, negatively impacting self-esteem, sense of purpose and relevance, culminating in loneliness. Interventions combatting loneliness can target individuals, relationships, communities or societies. We advocate for an intersectoral approach to support healthy ageing and reduce loneliness. This will require further research to evaluate new approaches with loneliness as the primary outcome, and additional funding to translate evidence into an integrated multi-level approach to addressing loneliness.

Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

BACKGROUND: Priority-setting partnerships between researchers and stakeholders (meaning consumers, health professionals and health decision-makers) may improve research relevance and value. The Cochrane Consumers and Communication Group (CCCG) publishes systematic reviews in 'health communication and participation', which includes concepts such as shared decision-making, patient-centred care and health literacy. We aimed to select and refine priority topics for systematic reviews in health communication and participation, and use these to identify five priority CCCG Cochrane Reviews. METHODS: Twenty-eight participants (14 consumers, 14 health professionals/decision-makers) attended a 1-day workshop in Australia. Using large-group activities and voting, participants discussed, revised and then selected 12 priority topics from a list of 21 previously identified topics. In mixed small groups, participants refined these topics, exploring underlying problems, who they affect and potential solutions. Thematic analysis identified cross-cutting themes, in addition to key populations and potential interventions for future Cochrane Reviews. We mapped these against CCCG's existing review portfolio to identify five priority reviews. RESULTS: Priority topics included poor understanding and implementation of patient-centred care by health services, the fact that health information can be a low priority for health professionals, communication and coordination breakdowns in health services, and inadequate consumer involvement in health service design. The four themes underpinning the topics were culture and organisational structures, health professional attitudes and assumptions, inconsistent experiences of care, and lack of shared understanding in the sector. Key populations for future reviews were described in terms of social health characteristics (e.g. people from indigenous or culturally and linguistically diverse backgrounds, elderly people, and people experiencing socioeconomic disadvantage) more than individual health characteristics. Potential interventions included health professional education, interventions to change health service/health professional culture and attitudes, and health service policies and standards. The resulting five priority Cochrane Reviews identified were improving end-of-life care communication, patient/family involvement in patient safety, improving future doctors' communication skills, consumer engagement strategies, and promoting patient-centred care. CONCLUSIONS: Stakeholders identified priority topics for systematic reviews associated with structural and cultural challenges underlying health communication and participation, and were concerned that issues of equity be addressed. Priority-setting with stakeholders presents opportunities and challenges for review producers.

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

OBJECTIVE: To 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). SETTING: International. PARTICIPANTS: We 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). DESIGN: Survey. METHODS: We 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. RESULTS: Participants 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. CONCLUSIONS: Consumers 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.