Producing knowledge together: a participatory approach to synthesising research across a large-scale collaboration in Aboriginal and Torres Strait Islander health.

BACKGROUND: Despite that stakeholder participation in evidence synthesis could result in more useful outcomes, there are few examples of processes that actively involve them in synthesis work. Techniques are needed that engage diverse stakeholders as equal partners in knowledge co-production. The aims of this paper are to describe an innovative participatory process of synthesising a large body of academic research products and compare the findings of the participatory process against two traditional approaches to synthesis: a rapid review and a structured review. METHODS: First, a rapid synthesis of all research outputs (n = 86) was conducted by researchers with in-depth knowledge of the collaboration's research. Second, a team of researchers and service providers conducted a structured synthesis of seventy-eight peer-reviewed articles and reports generated by the collaboration. Fifty-five publications were brought forward for further synthesis in part three, a facilitated participatory synthesis. Finally, we explored the value added by the participatory method by comparing findings generated across the three synthesis approaches. RESULTS: Twelve researchers and 11 service providers/policy partners-8 self-identified as Aboriginal and/or Torres Strait Islander-participated in two facilitated workshops (totalling 4 h). Workshop activities engaged participants in reviewing publication summaries, identifying key findings, and evoked review, discussion and refinement. The process explicitly linked experiential knowledge to citations of academic research, clearly connecting the two knowledge types. In comparing the findings generated across all three methods we found mostly consistencies; the few discrepancies did not contradict but gave deeper insights into statements created by the other methods. The participatory synthesis generated the most, detailed, and unique findings, and contextual insights about the relevance of the key messages for practice. CONCLUSION: The participatory synthesis engaged stakeholders with diverse backgrounds and skillsets in synthesising a large body of evidence in a relatively short time. The participatory approach produced findings comparable to traditional synthesis methods while extending knowledge and identifying lessons most relevant for the participants who, ultimately, are the end users of the research. This process will interest other large-scale research collaborations seeking to engage stakeholders in evidence synthesis.

Social Support and Diabetes Management Among Older American Indians.

Objective: Greater understanding how relationships that can facilitate or impede type 2 diabetes (T2D) management and control among older American Indian people is an overlooked, yet urgently needed strategy. Thus, we examined social support among older American Indian people in relation to their T2D management. Methods: During the fall 2015, we conducted qualitative interviews with 28 participants aged ≥ 60 years who were members of a federally-recognized tribe. Drawing upon the buffering and direct effects theoretical models of how social support affects health, we examined transcribed audio recordings of the interviews with a systematic text analysis approach. We used a low-inference qualitative descriptive design to provide a situated understanding of participants' life experiences using their naturalistic expressions. Results: The mean age of our participants was 73.0 ± 6.4 years with a mean HbA1c of 7.3 ± 1.5. Main social support sources were family, clinicians/formal services, community/culture, and spiritual/God. All four common social support types were represented, namely emotional, instrumental, informational, and appraisal support with most being instrumental in nature. A prominent gender difference was seen with respect to men receiving more instrumental support family/friends support than women. Discussion: Value orientations among American Indian people often reflect extended social systems and interdependence. A deeper understanding is needed of how social relationships can be better leveraged to aid in effective T2D management among older American Indian people. The development and implementation of evidence-based social network interventions with an assets-based orientation that build upon the cultural value of reciprocity hold promise to improve T2D outcomes of older American Indian people.

The Feasibility of Recruiting and Training Lay Leaders During Real-World Program Delivery and Scale-up: The Case of Walk With Ease.

Introduction. To maximize limited resources, many health promotion programs are designed to be delivered by volunteer lay leaders. But this model poses challenges to implementation in real-world settings and barriers to successfully scaling-up programs. This study examines the current lay leader training model for Walk With Ease, a Centers for Disease Control and Prevention-funded evidence-based arthritis program delivered at-scale. Method. Recruited volunteers (n = 106) opted into free online or in-person training and agreed to deliver one Walk With Ease program within the following year-only 49%, however, did. Using logistic regression models and qualitative interviews, we explored predictors of volunteer delivery. Results. Volunteers had higher odds of delivering programs if they trained online (odds ratio [OR] = 9.04, 95% confidence interval [CI: 2.30, 48.36]), previously taught health programs (OR = 15.52, 95% CI [3.51, 103.55]) or trained in the second year of implementation (OR = 27.08, 95% CI [2.63, 415.78]). Qualitative findings underscored that successful volunteers were readied by their previous health education experience. Conclusions. While online training modes appear effective to prepare experienced volunteers, lay leaders required additional support. This calls into question whether lay-led delivery models are suitable for scaling-up programs with limited resources. Given the many lay-led health interventions for chronic disease self-management, investing in common training and infrastructures for lay leader development could advance the quality and sustainability of real-world program delivery.

The Weight of Words: Co-Analysis of Thick Ethnographic Description and "Friction" as Methodological Strategies in a Health Policy Research Partnership.

Co-production partnerships between policymakers, practitioners, and researchers are designed to facilitate production of relevant and readily usable research in health policy and practice contexts. We describe methodological strategies for in-depth collaborative analysis based on a co-produced ethnography of health promotion practice, involving ethnographic researchers and government-based research partners. We draw on a co-production dialogue to reflect critically on the role and value of co-analyzing research findings using thick ethnographic descriptions. The ambiguity of ethnographic imagery allowed flexibility in interpretation of findings and also generated friction. Specific ethnographic images became focal points for productive friction that crystallized ethical and analytical imperatives underpinning the diverse expertise in the team. To make the most of co-analysis of thick ethnographic descriptions, we assert that friction points must be reflexively considered as key learning opportunities for (a) higher order analysis informed by diverse analytical perspectives and (b) more cohesive and useful interpretations of research findings.

Key Performance Indicators for program scale-up and divergent practice styles: a study from NSW, Australia.

Implementing programs at scale has become a vital part of the government response to the continuing childhood obesity epidemic. We are studying the largest ever scale-up of school and child care obesity prevention programs in Australia. Health promotion teams support primary schools and early childhood services in their area to achieve a number of specified, evidence-based practices aimed at organizational changes to improve healthy eating and physical activity. Key performance indicators (KPIs) were devised to track program uptake across different areas-measuring both the proportion of schools and early childhood services reached and the proportion of practices achieved in each setting (i.e. the proportion of sites implementing programs as planned). Using a 'tight-loose-tight' model, all local health districts receive funding and are held accountable to reaching KPI implementation targets. However, local teams have independent discretion over how to best use funds to reach targets. Based on 12 months of ethnographic fieldwork and interviews across all districts, this study examines variations in the decision making and strategizing processes of the health promotion teams. We identified three distinct styles of practice: KPI-driven practice (strategic, focussed on targets); relationship-driven practice (focussed on long-term goals); and equity-driven practice (directing resources to sites most in need). In adapting to KPIs, teams make trade-offs and choices. Some teams struggled to balance a moral imperative to attend to equity issues, with a practical need to meet implementation targets. We discuss how models of program scale-up and tracking could possibly evolve to recognize this complexity.

Using a 'rich picture' to facilitate systems thinking in research coproduction.

BACKGROUND: In coproduction research, traditional 'end-users' are involved in the entire research process. The aim is to facilitate research translation by improving the timeliness and relevance of research. Because end-users often come from multiple sectors and hold diverse perspectives and priorities, involving them in coproduction can be challenging. Tools and approaches are needed to support coproduction teams to successfully navigate divergent viewpoints while producing rigorous but meaningful research outcomes. Rich pictures are a systems thinking tool to help make sense of complexity. In this paper, we describe how we developed and applied a 'rich picture' in a coproduction project with policy-level partners. METHODS: Guided by systems thinking principles, we conducted a systemic analysis of ethnographic fieldnotes collected as part of a broader study that examined the dynamics between an IT system and the implementation of the state-wide childhood obesity prevention programmes it was designed to monitor. Translating qualitative themes into metaphor and imagery, we created a visual depiction of the system to reflect the experience of the system's users (health promotion practitioners) and facilitated a workshop with policy-level programme administrators (i.e. participants, n = 7). Our aim was to increase the transparency of the system for our research partners and to spark new insights to improve the quality of programme implementation. RESULTS: Guided by provocative questions, participants discussed and challenged each other's thinking on the current functioning of the system. They identified future lines of inquiry to explore for quality improvement. Participants strongly agreed that the picture was a constructive way to engage with the ethnographic data but were challenged by the information and its implications. The opportunity for participants to co-learn from each other as well as from the picture was an added value. CONCLUSION: In the context of the facilitated workshop, the rich picture enabled research partners to engage with complex research findings and gain new insights. Its value was harnessed via the guided participatory process. This demonstrates the importance that, in the future, such tools should be accompanied by practices that enable participants to think with and apply systems thinking concepts and principles.

Making space for Aboriginal and Torres Strait Islander community health workers in health promotion.

Despite a clear need, 'closing the gap' in health disparities for Aboriginal and Torres Strait Islander communities (hereafter, respectfully referred to as Aboriginal) continues to be challenging for western health care systems. Globally, community health workers (CHWs) have proven effective in empowering communities and improving culturally appropriate health services. The global literature on CHWs reflects a lack of differentiation between the types of roles these workers carry out. This in turn impedes evidence syntheses informing how different roles contribute to improving health outcomes. Indigenous CHW roles in Australia are largely operationalized by Aboriginal Health Workers (AHWs)-a role situated primarily within the clinical health system. In this commentary, we consider whether the focus on creating professional AHW roles, although important, has taken attention away from the benefits of other types of CHW roles particularly in community-based health promotion. We draw on the global literature to illustrate the need for an Aboriginal CHW role in health promotion; one that is distinct from, but complementary to, that of AHWs in clinical settings. We provide examples of barriers encountered in developing such a role based on our experiences of employing Aboriginal health promoters to deliver evidence-based programmes in rural and remote communities. We aim to draw attention to the systemic and institutional barriers that persist in denying innovative employment and engagement opportunities for Aboriginal people in health.

Capturing implementation knowledge: applying focused ethnography to study how implementers generate and manage knowledge in the scale-up of obesity prevention programs.

BACKGROUND: Bespoke electronic information management systems are being used for large-scale implementation delivery of population health programs. They record sites reached, coordinate activity, and track target achievement. However, many systems have been abandoned or failed to integrate into practice. We investigated the unusual endurance of an electronic information management system that has supported the successful statewide implementation of two evidence-based childhood obesity prevention programs for over 5 years. Upwards of 80% of implementation targets are being achieved. METHODS: We undertook co-designed partnership research with policymakers, practitioners, and IT designers. Our working hypothesis was that the science of getting evidence-based programs into practice rests on an in-depth understanding of the role programs play in the ongoing system of local relationships and multiple accountabilities. We conducted a 12-month multisite ethnography of 14 implementation teams, including their use of an electronic information management system, the Population Health Information Management System (PHIMS). RESULTS: All teams used PHIMS, but also drew on additional informal tools and technologies to manage, curate, and store critical information for implementation. We identified six functions these tools performed: (1) relationship management, (2) monitoring progress towards target achievement, (3) guiding and troubleshooting PHIMS use, (4) supporting teamwork, (5) evaluation, and (6) recording extra work at sites not related to program implementation. Informal tools enabled practitioners to create locally derived implementation knowledge and provided a conduit between knowledge generation and entry into PHIMS. CONCLUSIONS: Implementation involves knowing and formalizing what to do, as well as how to do it. Our ethnography revealed the importance of hitherto uncharted knowledge about how practitioners develop implementation knowledge about how to do implementation locally, within the context of scaling up. Harnessing this knowledge for local use required adaptive and flexible systems which were enabled by informal tools and technologies. The use of informal tools also complemented and supported PHIMS use suggesting that both informal and standardized systems are required to support coordinated, large-scale implementation. While the content of the supplementary knowledge required to deliver the program was specific to context, functions like managing relationships with sites and helping others in the team may be applicable elsewhere.

Will E-Monitoring of Policy and Program Implementation Stifle or Enhance Practice? How Would We Know?

Electronic or digital monitoring systems could promote the visibility of health promotion and disease prevention programs by providing new tools to support the collection, analysis, and reporting of data. In clinical settings however, the benefits of e-monitoring of service delivery remain contested. While there are some examples of e-monitoring systems improving patient outcomes, the smooth introduction into clinical practice has not occurred. Expected efficiencies have not been realized. The restructuring of team work has been problematic. Most particularly, knowledge from research has not advanced sufficiently because the meaning of e-monitoring has not been well theorized in the first place. As enthusiasm for e-monitoring in health promotion grows, it behooves us to ensure that health promotion practice learns from these insights. We outline the history of program monitoring in health promotion and the development of large-scale e-monitoring systems to track policy and program delivery. We interrogate how these technologies can be understood, noticing how they inevitably elevate some parts of practice over others. We suggest that progress in e-monitoring research and development could benefit from the insights and methods of improvement science (the science that underpins how practitioners attempt to solve problems and promote quality) as conceptually distinct from implementation science (the science of getting particular evidence-based programs into practice). To fully appreciate whether e-monitoring of program implementation will act as an aid or barrier to health promotion practice we canvass a wide range of theoretical perspectives. We illustrate how different theories draw attention to different aspects of the role of e-monitoring, and its impact on practice.

Dynamics behind the scale up of evidence-based obesity prevention: protocol for a multi-site case study of an electronic implementation monitoring system in health promotion practice.

BACKGROUND: The effectiveness of many interventions to promote health and prevent disease has been well established. The imperative has therefore shifted from amassing evidence about efficacy to scale-up to maximise population-level health gains. Electronic implementation monitoring, or 'e-monitoring', systems have been designed to assist and track the delivery of preventive policies and programs. However, there is little evidence on whether e-monitoring systems improve the dissemination, adoption, and ongoing delivery of evidence-based preventive programs. Also, given considerable difficulties with e-monitoring systems in the clinical sector, scholars have called for a more sophisticated re-examination of e-monitoring's role in enhancing implementation. METHODS: In the state of New South Wales (NSW), Australia, the Population Health Information Management System (PHIMS) was created to support the dissemination of obesity prevention programs to 6000 childcare centres and elementary schools across all 15 local health districts. We have established a three-way university-policymaker-practice research partnership to investigate the impact of PHIMS on practice, how PHIMS is used, and how achievement of key performance indicators of program adoption may be associated with local contextual factors. Our methods encompass ethnographic observation, key informant interviews and participatory workshops for data interpretation at a state and local level. We use an on-line social network analysis of the collaborative relationships across local health district health promotion teams to explore the relationship between PHIMS use and the organisational structure of practice. DISCUSSION: Insights will be sensitised by institutional theory, practice theory and complex adaptive system thinking, among other theories which make sense of socio-technical action. Our working hypothesis is that the science of getting evidence-based programs into practice rests on an in-depth understanding of the role they play in the on-going system of local relationships and multiple accountabilities. Data will be synthesised to produce a typology to characterise local context, PHIMS use and key performance indicator achievement (of program implementation) across the 15 local health districts. Results could be used to continuously align e-monitoring technologies within quality improvement processes to ensure that such technologies enhance practice and innovation. A partnership approach to knowledge production increases the likelihood that findings will be put into practice.

"During early implementation you just muddle through": factors that impacted a statewide arthritis program's implementation.

The need to scale-up effective arthritis self-management programs is pressing as the prevalence of arthritis increases. The CDC Arthritis Program funds state health departments to work with local delivery systems to embed arthritis programs into their day-to-day work. To encourage organizational ownership and sustainability of programs, funding is restricted to offset program start-up costs. The purpose of this study was to identify factors that impacted the success of implementing an evidence-based arthritis self-management program, funded by the CDC Arthritis Program, into the Oregon Extension Service. We interviewed staff and partners involved in implementation who had and had not successfully delivered Walk With Ease (N = 12) to identify barriers and facilitators to scaling-up. Document analysis of administrative records was used to triangulate and expand on findings. Delivery goals defined by the funder were not met in Year 1: only 3 of the expected 28 programs were delivered. Barriers to implementation included insufficient planning for implementation driven by pressure to deliver programs and insufficient resources to support staff time. Facilitators included centralized administration of key implementation activities and staffs' previous experience implementing new programs. The importance of planning and preparing for implementation cannot be overlooked. Funders, however, eager to see deliverables, continue to define implementation goals in terms of program reach, exclusive of capacity-building. Lack of capacity-building can jeopardize staff buy-in, implementation quality, and sustainability. Based on our findings coupled with support from implementation literature, we offer recommendations for future large-scale implementation efforts operating under such funding restrictions.

Effectiveness of a Scaled-Up Arthritis Self-Management Program in Oregon: Walk With Ease.

OBJECTIVES: To evaluate the effectiveness of Walk With Ease (WWE), an evidence-based arthritis self-management program that was scaled up in Oregon in 2012 to 2014. METHODS: Guided by the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework, we collected participant surveys and attendance records and conducted observations. Preprogram and postprogram, participants self-reported pain and fatigue (scale: 0-10 points; high scores indicate more pain and fatigue) and estimated episodes of physical activity per week in the last month. RESULTS: Recruitment successfully reached the targeted population-sedentary adults with arthritis (n = 598). Participants reported significant reduction in pain (-0.47 points; P = .006) and fatigue (-0.58 points; P = .021) and increased physical activity (0.86 days/week; P < .001). WWE was adopted by workplaces and medical, community, faith, and retirement centers. Most WWE programs were delivered with high fidelity; average attendance was 47%. CONCLUSIONS: WWE is suitable for implementation by diverse organizations. Effect sizes for pain and fatigue were less than those in the original WWE studies, but this is to be expected for a large-scale implementation. Public Health Implications. WWE can be effectively translated to diverse, real-world contexts to help sedentary adults increase physical activity and reduce pain and fatigue.

Older American Indians' Perspectives on Health, Arthritis, and Physical Activity: Implications for Adapting Evidence-Based Interventions, Oregon, 2013.

INTRODUCTION: Despite the high prevalence of arthritis and physical disability among older American Indians, few evidence-based interventions that improve arthritis self-management via physical activity have been adapted for use in this population. The purpose of this study was to identify beliefs about health, arthritis, and physical activity among older American Indians living in a rural area in Oregon to help select and adapt an arthritis self-management program. METHODS: In partnership with a tribal health program, we conducted surveys, a focus group, and individual interviews with older American Indians with arthritis. Our sample comprised 6 focus group participants and 18 interviewees. The 24 participants were aged 48 to 82 years, of whom 67% were women. Forms B and C of the Multidimensional Health Locus of Control (MHLC) instrument, modified for arthritis, measured MHLC. RESULTS: The concepts of health, arthritis, and physical activity overlapped in that health was a holistic concept informed by cultural teachings that included living a healthy lifestyle, socializing, and being functionally independent. Arthritis inhibited health and healthy behaviors. Participants identified barriers such as unreliable transportation and recruiting challenges that would make existing interventions challenging to implement in this setting. The Doctor subscale had the highest MHLC (mean = 4.4 [standard deviation (SD), 1.0]), followed by the Internal subscale (3.9 [SD, 1.4]) and the Other People subscale (2.8 [SD, 1.1]). CONCLUSIONS: Existing evidence-based programs for arthritis should be adapted to address implementation factors, such as access to transportation, and incorporate cultural values that emphasize holistic wellness and social interconnectedness. Culturally sensitive programs that build on indigenous values and practices to promote active coping strategies for older American Indians with arthritis are needed.

Unmet Assistance Need Among Older American Indians: The Native Elder Care Study.

PURPOSE: We examined the prevalence and correlates of unmet assistance need with respect to activities of daily living (ADLs) and instrumental activities of daily living (IADLs) among older American Indians. DESIGN AND METHODS: Data for our analyses were collected in 2006-2008 as part of the Native Elder Care Study, a cross-sectional study of community-dwelling American Indians aged ≥55 years. In-person interviewer-administered surveys were used to collect data on demographic characteristics, physical functioning, mental and physical health, personal assistance needs, and psychosocial resources. RESULTS: Among those with an assistance need, 47.8% reported an unmet need with one or more ADLs or IADLs. Significant adjusted correlates of unmet assistance need included greater number of ADL and IADL difficulties and lower levels of social support. IMPLICATIONS: Initiatives and programs aimed at increasing social support and augmenting informal care networks can support efforts to meet American Indian adults' personal assistance needs.

Correlates of social support in older American Indians: the Native Elder Care Study.

OBJECTIVES: This study examined social support and identified demographic and health correlates among American Indians aged 55 years and older. METHODS: Data were derived from the Native Elder Care Study, a cross-sectional study of 505 community-dwelling American Indians aged ≥55 years. Social support was assessed using the Medical Outcomes Study Social Support Survey measure (MOS-SSS) of which psychometric properties were examined through factor analyses. Logistic regression analyses were used to identify associations between age, sex, educational attainment, marital status, depressive symptomatology, lower body physical functioning, and chronic pain and social support. RESULTS: Study participants reported higher levels of affectionate and positive interaction social support (88.2% and 81.8%, respectively) than overall (75.9%) and emotional (69.0%) domains. Increased age, being married/partnered, and female sex were associated with high social support in the final model. Decreased depressive symptomatology was associated with high overall, affectionate, and positive interaction support, and decreased chronic pain with affectionate support. The count of chronic conditions and functional disability were not associated with social support. CONCLUSIONS: Overall, we found high levels of social support for both men and women in this population, with the oldest adults in our study exhibiting the highest levels of social support. Strong cultural values of caring for older adults and a historical tradition of community cooperation may explain this finding. Future public health efforts may be able to leverage social support to reduce health disparities and improve mental and physical functioning.

ADAPTATIONS TO AN HIV COUNSELING AND TESTING INTERVENTION FROM A COUNSELOR PERSPECTIVE.

Understanding the balance between fidelity and adaptation for evidence-based interventions has the potential to improve their translation from research to practice. The Translation into Practice study explores variation in program implementation within organizations utilizing the RESPECT program, an HIV counseling and testing intervention. Counselors (N = 70) were interviewed using a semistructured interview guide to examine both the influential factors on, and the subsequent adaptations to, RESPECT. Almost all counselors reported making adaptations (N = 69). Adaptations were made both to key characteristics (mean [M] = 2.24, standard deviation [SD] = 1.3) and to core components (M = 0.5, SD = 0.8). Counselors identified the environmental context and factors within the counseling context as common influences leading to adaptation. These findings suggest adaptations were a routine part of program usage. To improve implementation of the RESPECT program, further research is needed to assess the degree to which adaptations can be made to better meet the needs of agencies and clients without compromising fidelity.