The risks and benefits of using social media to engage consumers in service design and quality improvement in Australian public hospitals: findings from an interview study of key stakeholders.

BACKGROUND: Engaging consumers - patients, families, carers and community members who are current or potential service users - in the planning, design, delivery, and improvement of health services is a requirement of public hospital accreditation in Australia. There is evidence of social media being used for consumer engagement in hospitals internationally, but in Australia this use is uncommon and stakeholders' experiences have not been investigated. The aim of the study was to explore the experiences and beliefs of key Australian public hospital stakeholders around using social media as a consumer engagement tool. This article focuses on the study findings relating to methods, risks, and benefits of social media use. METHODS: Semi-structured interviews were conducted with Australian public hospital stakeholders in consumer representative, consumer engagement/patient experience, communications or quality improvement roles. Qualitative data were analysed using a deductive content analysis method. An advisory committee of consumer and service provider stakeholders provided input into the design and conduct of this study. RESULTS: Twenty-six Australian public hospital service providers and consumers were interviewed. Participants described social media being used to: recruit consumers for service design and quality improvement activities; as an online space to conduct consultations or co-design; and, to gather feedback and patient experience data. The risks and benefits discussed by interview participants were grouped into five themes: 1) overcoming barriers to engagement, 2) consumer-initiated engagement; 3) breadth vs depth of engagement, 4) organisational transparency vs control and 5) users causing harm. CONCLUSIONS: Social media can be used to facilitate consumer engagement in hospital service design and quality improvement. However, social media alone is unlikely to solve broader issues commonly experienced within health consumer engagement activities, such as tokenistic engagement methods, and lack of clear processes for integrating consumer and patient feedback into quality improvement activities.

What are relevant, feasible and effective approaches to promote acceptance, uptake and adherence to physical distancing measures for COVID-19 prevention and control?

Physical distancing measures have been implemented worldwide to contain the transmission of COVID-19, but how best to communicate with the public to promote acceptance, uptake and adherence to these measures is less clear. This rapid review analysed evidence regarding communication with individuals and communities within the wider structural and sociopolitical context of the pandemic to support public health decision-makers when planning and implementing physical distancing measures. Findings indicated the critical role played by public communication and information in the pandemic response. Consistent features of effective communication included: clear, consistent and actionable content; attention to the timing and currency of messages; consideration of the audiences for communication within and across populations; and deliberate considerations of tailoring and equity to ensure diverse population groups are reached and existing inequalities addressed. Comprehensive practical support, including access to essential services and financial support, was also critical to promote acceptance, uptake and adherence to required measures. Findings also emphasized the importance of building and maintaining public trust in authorities and of engaging communities when planning and delivering messages related to physical distancing measures.

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.

Consumer engagement critical to success in an Australian research project: reflections from those involved.

This paper describes the people, activities and methods of consumer engagement in a complex research project, and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement. The 2.5-year Integrating and Deriving Evidence Experiences and Preferences (IN-DEEP) study was conducted to develop online consumer summaries of multiple sclerosis (MS) treatment evidence in partnership with a three-member consumer advisory group. Engagement methods included 6-monthly face-to-face meetings and email contact. Advisory group members were active in planning, conduct and dissemination and translational phases of the research. Engaging consumers in this way improved the quality of the research process and outputs by: being more responsive to, and reflective of, the experiences of Australians with MS; expanding the research reach and depth; and improving the researchers' capacity to manage study challenges. Advisory group members found contributing their expertise to MS research satisfying and empowering, whereas researchers gained confidence in the research direction. Managing the unpredictability of MS was a substantive challenge; the key enabler was the 'brokering role' of the researcher based at an MS organisation. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.

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.

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

BACKGROUND AND AIMS: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. METHODS: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. RESULTS: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. CONCLUSION: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.

How could health information be improved? Recommended actions from the Victorian Consultation on Health Literacy.

Objective Health literacy is on the policy agenda. Accessible, high-quality health information is a major component of health literacy. Health information materials include print, electronic or other media-based information enabling people to understand health and make health-related decisions. The aim of the present study was to present the findings and recommended actions as they relate to health information of the Victorian Consultation on Health Literacy. Methods Notes and submissions from the 2014 Victorian Consultation workshops and submissions were analysed thematically and a report prepared with input from an advisory committee. Results Health information needs to improve and recommendations are grouped into two overarching themes. First, the quality of information needs to be increased and this can be done by developing a principle-based framework to inform updating guidance for information production, formulating standards to raise quality and improving the systems for delivering information to people. Second, there needs to be a focus on users of health information. Recommendation actions were for information that promoted active participation in health encounters, resources to encourage critical users of health information and increased availability of information tailored to population diversity. Conclusion A framework to improve health information would underpin the efforts to meet literacy needs in a more consistent way, improving standards and ultimately increasing the participation by consumers and carers in health decision making and self-management. What is known about the topic? Health information is a critical component of the concept of health literacy. Poorer health literacy is associated with poorer health outcomes across a range of measures. Improving access to and the use of quality sources of health information is an important strategy for meeting the health literacy needs of the population. In recent years, health services and governments have taken a critical interest in improving health literacy. What does this paper add? This article presents the findings of the Victorian Consultation on Health Literacy as they relate to needs, priorities and potential actions for improving health information. In the context of the National Statement for Health Literacy, health information should be a priority, given its centrality to the public's management of its own health and effective, standards-based, patient-centred clinical care. A framework to improve health information would underpin the efforts of government, services and consumer organisations to meet literacy needs in a more consistent way, improving standards and ultimately increasing the participation by consumers and carers in health decision making and self-management. What are the implications for practitioners? The development and provision of health information materials needs to be systematised and supported by infrastructure, requiring leadership, cultural change, standards and skills development.

Associations between multimorbidity and additional burden for working-age adults with specific forms of musculoskeletal conditions: a cross-sectional study.

BACKGROUND: Multiple health conditions are increasingly a problem for adults with musculoskeletal conditions. However, multimorbidity research has focused primarily on the elderly and those with a limited subset of musculoskeletal disorders. We sought to determine whether associations between multimorbidity and additional burden differ with specific forms of musculoskeletal conditions among working-age adults. METHODS: Data were sourced from a nationally representative Australian survey. Specific musculoskeletal conditions examined were osteoarthritis; inflammatory arthritis; other forms of arthritis or arthropathies; musculoskeletal conditions not elsewhere specified; gout; back pain; soft tissue disorders; or osteoporosis. Multimorbidity was defined as the additional presence of one or more of the Australian National Health Priority Area conditions. Burden was assessed by self-reported measures of: (i) self-rated health (ii) musculoskeletal-related healthcare and medicines utilisation and, (iii) general healthcare utilisation. Associations between multimorbidity and additional health or healthcare utilisation burden among working-age adults (aged 18 - 64 years of age) with specific musculoskeletal conditions were estimated using logistic regression, adjusting for confounders. Interaction terms were fitted to identify whether there were specific musculoskeletal conditions where multimorbidity was more strongly associated with poorer health or greater healthcare utilisation than in the remaining musculoskeletal group. RESULTS: Among working-age adults, for each of the specified musculoskeletal conditions, multimorbidity was associated with similar, increased likelihood of additional self-rated health burden and certain types of healthcare utilisation. While there were differences in the relationships between multimorbidity and burden for each of the specific musculoskeletal conditions, no one specific musculoskeletal condition appeared to be consistently associated with greater additional health burden in the presence of multimorbidity across the majority of self-rated health burden and healthcare use measures. CONCLUSIONS: For working-age people with any musculoskeletal conditions examined here, multimorbidity increases self-reported health and healthcare utilisation burden. As no one musculoskeletal condition appears consistently worse off in the presence of multimorbidity, there is a need to better understand and identify strategies that acknowledge and address the additional burden of concomitant conditions for working-age adults with a range of musculoskeletal conditions.

Cross-sectional examination of musculoskeletal conditions and multimorbidity: influence of different thresholds and definitions on prevalence and association estimates.

BACKGROUND: Multimorbidity and musculoskeletal conditions create substantial burden for people and health systems. Quantifying the extent of co-occurring conditions is hampered by conceptual heterogeneity, imprecision and/or indecision about how multimorbidity is defined. The purpose of this study is to examine the influence of different ways of operationalising multimorbidity on multimorbidity prevalence rates with a focus on working-age adults with musculoskeletal conditions. Weighted population prevalence rates of multimorbidity among working-age Australians were estimated using data from the National Health Survey. Two nominal thresholds (2+ or 3+ co-occurring conditions) and three operational definitions of multimorbidity (survey-, policy- and research-based) were examined. Using logistic regression, we estimated the association between the prevalence of multimorbidity among persons with musculoskeletal conditions compared to persons with non-musculoskeletal conditions for each definition and threshold combination. RESULTS: As few as 7.9% of working-age Australians have 2+ conditions using the research-based definition (95% CI 7.4-8.5%), compared to estimates of 15.3% (95% CI 14.3-16.2%) and 61.5% (95% CI 60.3-62.7%). with the policy- and survey-based definitions, respectively. Depending on definition, with the 3+ threshold multimorbidity prevalence ranged from 2.1% (research) to 41.9% (survey). Among the sub-sample with musculoskeletal conditions, multimorbidity with the 2+ threshold ranged from 20.2 to 92.2%; and with 3+ threshold from 5.9 to 75.4%, again lowest with the research-definition and highest with the survey-definition. When compared to any other condition (i.e. non-musculoskeletal conditions), all musculoskeletal conditions were positively associated with multimorbidity, regardless of definition or threshold. CONCLUSIONS: Depending on definition and threshold, multimorbidity is either rare or endemic in working-age Australians. Irrespective of definition, musculoskeletal conditions are a near-ubiquitous feature of multimorbidity.

Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.

BACKGROUND AND OBJECTIVE: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study. DESIGN: Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame. RESULTS: Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS. CONCLUSIONS: People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.

Communication Vulnerabilities in Working-age Australians with Musculoskeletal Conditions: A Cross-sectional Analysis.

OBJECTIVE: To estimate the prevalence of communication vulnerability (CV) and its association with various health measures among working-age Australians with musculoskeletal conditions (MSK). The various vulnerability characteristics may lead to inadequate communication between consumers and healthcare professionals. METHODS: Prevalence of CV among 18-64 year olds, with or without MSK, was analyzed using the Australian Bureau of Statistics' National Health Survey 2007-08 data. Associations between CV and measures of health complexity (accumulating multimorbidity and risk factors) and health burden (poorer self-rated health, psychological distress, and pain restricting work) in the MSK population were estimated using logistic regression. Further analyses were conducted for each vulnerability characteristic to determine the degree of association (crude and adjusted) with measures of interest. RESULTS: CV were more prevalent in working-age Australians with MSK (65%) than those without (51%). Adjusted for age and sex among working-age Australians with at least 1 MSK, those with 1 or more CV were more likely to have multimorbidity [adjusted OR (aOR) = 1.8, 95% CI 1.5-2.2], lifestyle risk factors (aOR = 2.1, 95% CI 1.5-2.8), poorer self-rated health (aOR = 3.4, 95% CI 2.7-4.2), greater psychological distress (aOR = 2.9, 95% CI 2.3-3.7), and pain restricting employment (aOR = 1.7, 95% CI 1.4-2.1) compared with those without CV. CONCLUSION: For working-age people, there is an association between MSK and CV. For those with MSK, CV were associated with increased likelihood of health complexity and burden. These findings have policy and clinical relevance. Research is needed to determine whether interventions that address these specific CV characteristics reduce the burden of disease within these populations.

Web search behavior and information needs of people with multiple sclerosis: focus group study and analysis of online postings.

BACKGROUND: Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. OBJECTIVE: The objective of this study was to analyze MS patients and their family members' experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. METHODS: We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. RESULTS: Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist's visit or when a new therapy was proposed. Social networks are widely used to read others' stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. CONCLUSIONS: MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices.

Improving the experiences and health of people with multimorbidity: exploratory research with policymakers and information providers on comorbid arthritis.

Multimorbidity has emerged as a complex health issue with the burden falling predominantly on patients, families and the primary health care sector. Evidence-informed communication and participation, activities informed by evidence and people's views and experiences, has the potential to improve health outcomes for people with multimorbidity. In recognition of their role in shaping future actions, we conducted focus groups with policymakers and information providers. The aim of this article is to report on the range and impacts of communication problems in multimorbidity, and identify points of intervention. To facilitate and focus dialogue, comorbid arthritis was selected as the case example. Two focus groups were held: one with policymakers and the other with health information providers. Participants were asked to discuss communication problems and possibilities relevant to multimorbidity, using examples from comorbid arthritis where relevant. Participants highlighted three main areas on which to focus future efforts to improve the health outcomes and experiences of people with multimorbidity: (1) make explicit the problems of multimorbidity and communication; (2) recognise that both multimorbidity and communication issues are compounding factors; and (3) consider actions at policy, service, community and individual levels. Examining multimorbidity through the lens of communication issues identified the significant burden across different domains of the health system. The focus on communication may facilitate a cross-disease perspective to emerge and assist with policy development.

Knowledge translation of research findings.

BACKGROUND: One of the most consistent findings from clinical and health services research is the failure to translate research into practice and policy. As a result of these evidence-practice and policy gaps, patients fail to benefit optimally from advances in healthcare and are exposed to unnecessary risks of iatrogenic harms, and healthcare systems are exposed to unnecessary expenditure resulting in significant opportunity costs. Over the last decade, there has been increasing international policy and research attention on how to reduce the evidence-practice and policy gap. In this paper, we summarise the current concepts and evidence to guide knowledge translation activities, defined as T2 research (the translation of new clinical knowledge into improved health). We structure the article around five key questions: what should be transferred; to whom should research knowledge be transferred; by whom should research knowledge be transferred; how should research knowledge be transferred; and, with what effect should research knowledge be transferred? DISCUSSION: We suggest that the basic unit of knowledge translation should usually be up-to-date systematic reviews or other syntheses of research findings. Knowledge translators need to identify the key messages for different target audiences and to fashion these in language and knowledge translation products that are easily assimilated by different audiences. The relative importance of knowledge translation to different target audiences will vary by the type of research and appropriate endpoints of knowledge translation may vary across different stakeholder groups. There are a large number of planned knowledge translation models, derived from different disciplinary, contextual (i.e., setting), and target audience viewpoints. Most of these suggest that planned knowledge translation for healthcare professionals and consumers is more likely to be successful if the choice of knowledge translation strategy is informed by an assessment of the likely barriers and facilitators. Although our evidence on the likely effectiveness of different strategies to overcome specific barriers remains incomplete, there is a range of informative systematic reviews of interventions aimed at healthcare professionals and consumers (i.e., patients, family members, and informal carers) and of factors important to research use by policy makers. SUMMARY: There is a substantial (if incomplete) evidence base to guide choice of knowledge translation activities targeting healthcare professionals and consumers. The evidence base on the effects of different knowledge translation approaches targeting healthcare policy makers and senior managers is much weaker but there are a profusion of innovative approaches that warrant further evaluation.

Building blocks for meta-synthesis: data integration tables for summarising, mapping, and synthesising evidence on interventions for communicating with health consumers.

BACKGROUND: Systematic reviews have developed into a powerful method for summarising and synthesising evidence. The rise in systematic reviews creates a methodological opportunity and associated challenges and this is seen in the development of overviews, or reviews of systematic reviews. One of these challenges is how to summarise evidence from systematic reviews of complex interventions for inclusion in an overview. Interventions for communicating with and involving consumers in their care are frequently complex. In this article we outline a method for preparing data integration tables to enable review-level synthesis of the evidence on interventions for communication and participation in health. METHODS AND RESULTS: Systematic reviews published by the Cochrane Consumers and Communication Review Group were utilised as the basis from which to develop linked steps for data extraction, evidence assessment and synthesis. The resulting output is called a data integration table. Four steps were undertaken in designing the data integration tables: first, relevant information for a comprehensive picture of the characteristics of the review was identified from each review, extracted and summarised. Second, results for the outcomes of the review were assessed and translated to standardised evidence statements. Third, outcomes and evidence statements were mapped into an outcome taxonomy that we developed, using language specific to the field of interventions for communication and participation. Fourth, the implications of the review were assessed after the mapping step clarified the level of evidence available for each intervention. CONCLUSION: The data integration tables represent building blocks for constructing overviews of review-level evidence and for the conduct of meta-synthesis. Individually, each table aims to improve the consistency of reporting on the features and effects of interventions for communication and participation; provides a broad assessment of the strength of evidence derived from different methods of analysis; indicates a degree of certainty with results; and reports outcomes and gaps in the evidence in a consistent and coherent way. In addition, individual tables can serve as a valuable tool for accurate dissemination of large amounts of complex information on communication and participation to professionals as well as to members of the public.