© 2016 Milbank Memorial Fund. Policy Points: Co-creation - collaborative knowledge generation by academics working alongside other stakeholders - is an increasingly popular approach to aligning research and service development. It has potential for "moving beyond the ivory towers" to deliver significant societal impact via dynamic, locally adaptive community-academic partnerships. Principles of successful co-creation include a systems perspective, a creative approach to research focused on improving human experience, and careful attention to governance and process. If these principles are not followed, co-creation efforts may fail. Context Co-creation - collaborative knowledge generation by academics working alongside other stakeholders - reflects a "Mode 2" relationship (knowledge production rather than knowledge translation) between universities and society. Co-creation is widely believed to increase research impact. Methods We undertook a narrative review of different models of co-creation relevant to community-based health services. We contrasted their diverse disciplinary roots and highlighted their common philosophical assumptions, principles of success, and explanations for failures. We applied these to an empirical case study of a community-based research-service partnership led by the Centre of Research Excellence in Quality and Safety in Integrated Primary-Secondary Care at the University of Queensland, Australia. Findings Co-creation emerged independently in several fields, including business studies ("value co-creation"), design science ("experience-based co-design"), computer science ("technology co-design"), and community development ("participatory research"). These diverse models share some common features, which were also evident in the case study. Key success principles included (1) a systems perspective (assuming emergence, local adaptation, and nonlinearity); (2) the framing of research as a creative enterprise with human experience at its core; and (3) an emphasis on process (the framing of the program, the nature of relationships, and governance and facilitation arrangements, especially the style of leadership and how conflict is managed). In both the literature review and the case study, co-creation "failures" could often be tracked back to abandoning (or never adopting) these principles. All co-creation models made strong claims for significant and sustainable societal impacts as a result of the adaptive and developmental research process; these were illustrated in the case study. Conclusions Co-creation models have high potential for societal impact but depend critically on key success principles. To capture the nonlinear chains of causation in the co-creation pathway, impact metrics must reflect the dynamic nature and complex interdependencies of health research systems and address processes as well as outcomes.

Achieving research impact through co-creation in community-based health services: Literature review and case study

The nature of cancer control is changing, with an increasing emphasis, fuelled by public and political demand, on prevention, early diagnosis, and patient experience during and after treatment. At the same time, primary care is increasingly promoted, by governments and health funders worldwide, as the preferred setting for most health care for reasons of increasing need, to stabilise health-care costs, and to accommodate patient preference for care close to home. It is timely, then, to consider how this expanding role for primary care can work for cancer control, which has long been dominated by highly technical interventions centred on treatment, and in which the contribution of primary care has been largely perceived as marginal. In this Commission, expert opinion from primary care and public health professionals with academic and clinical cancer expertise—from epidemiologists, psychologists, policy makers, and cancer specialists—has contributed to a detailed consideration of the evidence for cancer control provided in primary care and community care settings. Ranging from primary prevention to end-of-life care, the scope for new models of care is explored, and the actions needed to effect change are outlined. The strengths of primary care—its continuous, coordinated, and comprehensive care for individuals and families—are particularly evident in prevention and diagnosis, in shared follow-up and survivorship care, and in end-of-life care. A strong theme of integration of care runs throughout, and its elements (clinical, vertical, and functional) and the tools needed for integrated working are described in detail. All of this change, as it evolves, will need to be underpinned by new research and by continuing and shared multiprofessional development.

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The expanding role of primary care in cancer control

Background Implementation of the chronic care model (CCM) has been shown to be an effective preventative strategy to improve outcomes in diabetes mellitus, depression, and congestive heart failure, but data are lacking regarding the effectiveness of this model in preventing complications in patients with chronic obstructive pulmonary disease. Methods We searched the MEDLINE, CINAHL, and Cochrane databases from inception to August 2005 and included English-language articles that enrolled adults with chronic obstructive pulmonary disease and (1) contained intervention(s) with CCM component(s), (2) included a comparison group or measures at 2 points (before/after), and (3) had relevant outcomes. Two reviewers independently extracted data. Results Symptoms, quality of life, lung function, and functional status were not significantly different between the intervention and control groups. However, pooled relative risks (95% confidence intervals) for emergency/unscheduled visits and hospitalizations for the group that received at least 2 CCM components were 0.58 (0.42-0.79) and 0.78 (0.66-0.94), respectively. The weighted mean difference (95% confidence interval) for hospital stay was −2.51 (−3.40 to −1.61) days shorter for the group that received 2 or more components. There were no significant differences for those receiving only 1 CCM component. Conclusions Limited published data exist evaluating the efficacy of CCM components in chronic obstructive pulmonary disease management. However, pooled data demonstrated that patients with chronic obstructive pulmonary disease who received interventions with 2 or more CCM components had lower rates of hospitalizations and emergency/unscheduled visits and a shorter length of stay compared with control groups. The results of this review highlight the need for well-designed trials in this population.

https://jamanetwork.com/journals/jamainternalmedicine/articlepdf/412079/ira60022_551_561.pdf

Systematic review of the chronic care model in chronic obstructive pulmonary disease prevention and management.

Integrated care is a key strategy in reforming health systems around the world. Despite its importance, the concept's polymorphous nature and lack of specificity and clarity significantly hamper systematic understanding, successful application and meaningful evaluation. This article explores the many definitions, concepts, logics and methods found in health system and service integration. In addition to framing this evolving, albeit imprecise field, the article summarizes the main elements or building blocks of integrated care and suggests a way to address its various complexities and unknowns in a real-world sense.

All Together Now: A Conceptual Exploration of Integrated Care.

We conducted a systematic review of the literature about home telehealth for chronic obstructive pulmonary disease (COPD) compared with usual care An electronic literature search identified 6241 citations From these, nine original studies (10 references) relating to 858 patients were selected for inclusion in the review Four studies compared home telemonitoring with usual care, and six randomized controlled trials compared telephone support with usual care Clinical heterogeneity was present in many of the outcomes measured Home telehealth (home telemonitoring and telephone support) was found to reduce rates of hospitalization and emergency department visits, while findings for hospital bed days of care varied between studies However, the mortality rate was greater in the telephone-support group compared with usual care (risk ratio = 121; 95% CI: 084 to 175) Home telehealth interventions were similar or better than usual care for quality of life and patient satisfaction outcomes

Home telehealth for chronic obstructive pulmonary disease: a systematic review and meta-analysis

Integrated multidisciplinary care is difficult to achieve between specialist clinical services and primary care practitioners, but should improve outcomes for patients with chronic and/or complex chronic physical diseases. This systematic review identifies outcomes of different models that integrate specialist and primary care practitioners, and characteristics of models that delivered favourable clinical outcomes. For quality appraisal, the Cochrane Risk of Bias tool was used. Data are presented as a narrative synthesis due to marked heterogeneity in study outcomes. Ten studies were included. Publication bias cannot be ruled out. Despite few improvements in clinical outcomes, significant improvements were reported in process outcomes regarding disease control and service delivery. No study reported negative effects compared with usual care. Economic outcomes showed modest increases in costs of integrated primary-secondary care. Six elements were identified that were common to these models of integrated primary-secondary care: (1) interdisciplinary teamwork; (2) communication/information exchange; (3) shared care guidelines or pathways; (4) training and education; (5) access and acceptability for patients; and (6) a viable funding model. Compared with usual care, integrated primary-secondary care can improve elements of disease control and service delivery at a modestly increased cost, although the impact on clinical outcomes is limited. Future trials of integrated care should incorporate design elements likely to maximise effectiveness.

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Systematic review of integrated models of health care delivered at the primary-secondary interface: how effective is it and what determines effectiveness?

This study assessed the impact of a randomized trial of nursing-based case management for patients with chronic obstructive pulmonary disease, their caregivers, and nursing and medical staff. Sixty-six patients were matched by FEV on admission to hospital, and randomized into an intervention or control group. Intervention group patients reported significantly less anxiety at 1 month postdischarge; however, this effect was not sustained. There was little difference between groups in terms of unplanned readmissions, depression, symptoms, support, and subjective well being. Interviews with patients and caregivers found that the case management improved access to resources and staff-patient communication. Interviews with nursing and medical staff found that case management improved communication between staff and enhanced patient care.(1)

A Randomized Control Trial of Nursing-based Case Management for Patients With Chronic Obstructive Pulmonary Disease

Effective cancer care depends on inter-sectoral and inter-professional communication. General Practitioners (GPs) play a pivotal role in managing the health of most Australians, but their role in cancer care is unclear. This qualitative study explored GPs’ views of this role and factors influencing their engagement with cancer care. Twelve metropolitan and non-metropolitan GPs in Queensland, Australia, were recruited between April and May 2008, and three focus groups and one interview were conducted using open-ended questions. The transcripts were analysed thematically. The first theme, GPs’ perceptions of their role, comprised subthemes corresponding to four phases of the trajectory. The second theme, Enhancing GPs’ involvement in ongoing cancer care, comprised subthemes regarding enhanced communication and clarification of roles and expectations. GPs’ role in cancer care fluctuates between active advocacy during diagnosis and palliation, and ambivalent redundancy in between. The role is influenced by socioeconomic, clinical and geographical factors, patients’ expectations and GPs’ motivation. Not all participants wanted an enhanced role in cancer care, but all valued better specialist–GP communication. Role clarification is needed, together with greater mutual trust between GPs and specialists. Key needs included accessible competency training and mentoring for doctors unfamiliar with the system. Existing system barriers and workforce pressures in general practice must be addressed to improve the sharing of cancer care. Only one metropolitan focus group was conducted, so saturation of themes may not have been reached. The challenges of providing cancer care in busy metropolitan practices are multiplied in non-metropolitan settings with less accessible resources and where distance affects specialist communication. Non-metropolitan GPs learn from experience how to overcome referral and communication challenges. While the GPs identified solutions to their concerns, the role can be daunting. GPs are motivated to provide long-term care for their patients, but need to be acknowledged and supported by the health system.

General Practitioners’ perceptions of their role in cancer care and factors which influence this role

Objective: This paper explores the effects of perceived stage of cancer (PSOC) on carers' anxiety and depression during the patients' final year. Methods: A consecutive sample of patients and carers (N=98) were surveyed at regular intervals regarding PSOC, and anxiety and depression using the Hospital Anxiety and Depression Scale. Means were compared by gender using the Mann-Whitney U-test. The chi-square was used to analyse categorical data. Agreement between carers' and patients' PSOC was estimated using kappa statistics. Correlations between carers' PSOC and their anxiety and depression were calculated using the Spearman's rank correlation. Results: Over time, an increasing proportion of carers reported that the cancer was advanced, culminating at 43% near death. Agreement regarding PSOC was fair (kappa=0.29-0.34) until near death (kappa=0.21). Carers' anxiety increased over the year; depression increased in the final 6 months. Females were more anxious (p=0.049, 6 months; p=0.009, 3 months) than males, and more depressed until 1 month to death. The proportion of carers reporting moderate-severe anxiety almost doubled over the year to 27%, with more females in this category at 6 months (p=0.05). Carers with moderate-severe depression increased from 6 to 15% over the year. Increased PSOC was weakly correlated with increased anxiety and depression. Conclusions: Carers' anxiety exceeded depression in severity during advanced cancer. Females generally experienced greater anxiety and depression. Carers were more realistic than patients regarding the ultimate outcome, which was reflected in their declining mental health, particularly near the end.

The impact of perceived stage of cancer on carers’ anxiety and depression during the patients’ final year of life

Objective: This paper explores the effects of perceived stage of cancer (PSOC) on carers' anxiety and depression during the patients' final year. 
Methods: A consecutive sample of patients and carers (N=98) were surveyed at regular intervals regarding PSOC, and anxiety and depression using the Hospital Anxiety and Depression Scale. Means were compared by gender using the Mann-Whitney U-test. The chi-square was used to analyse categorical data. Agreement between carers' and patients' PSOC was estimated using kappa statistics. Correlations between carers' PSOC and their anxiety and depression were calculated using the Spearman's rank correlation. 
Results: Over time, an increasing proportion of carers reported that the cancer was advanced, culminating at 43% near death. Agreement regarding PSOC was fair (kappa=0.29-0.34) until near death (kappa=0.21). Carers' anxiety increased over the year; depression increased in the final 6 months. Females were more anxious (p=0.049, 6 months; p=0.009, 3 months) than males, and more depressed until 1 month to death. The proportion of carers reporting moderate-severe anxiety almost doubled over the year to 27%, with more females in this category at 6 months (p=0.05). Carers with moderate-severe depression increased from 6 to 15% over the year. Increased PSOC was weakly correlated with increased anxiety and depression. 
Conclusions: Carers' anxiety exceeded depression in severity during advanced cancer. Females generally experienced greater anxiety and depression. Carers were more realistic than patients regarding the ultimate outcome, which was reflected in their declining mental health, particularly near the end.

Letitia Burridge

Papers

Systematic review of integrated models of health care delivered at the primary-secondary interface: how effective is it and what determines effectiveness?

A Randomized Control Trial of Nursing-based Case Management for Patients With Chronic Obstructive Pulmonary Disease

General Practitioners’ perceptions of their role in cancer care and factors which influence this role

The impact of perceived stage of cancer on carers’ anxiety and depression during the patients’ final year of life

The impact of perceived stage of cancer on carers’ anxiety and depression during the patients’ final year of life