Community Participation in Health Systems Research: A Systematic Review Assessing the State of Research, the Nature of Interventions Involved and the Features of Engagement with Communities

BACKGROUND:

Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research.

OBJECTIVE:

To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries.

METHODOLOGY:

We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out ...

Action learning for health system governance: the reward and challenge of co-production

Health policy and systems research (HPSR) is centrally concerned with people, their relationships and the actions and practices they can implement towards better health systems. These concerns suggest that HPS researchers must work in direct engagement with the practitioners and practice central to the inquiry, acknowledging their tacit knowledge and drawing it into generating new insights into health system functioning. Social science perspectives are of particular importance in this field because health policies and health systems are themselves social and political constructs. However, how can social science methodologies such as action research and narrative and appreciative enquiry enable such research, and how can methodologies from different disciplines be woven together to construct and make meaning of evidence for 'this' field? This article seeks to present 'methodological musings' on these points, to prompt wider discussion on the practice of HPSR. It draws on one long-term collaborative action learning research project being ...

SUSTAIN Project: Sustainable tailored integrated care for older people in Europe.

SUSTAIN is a cross-European research project and stands for sustainable tailored integrated care for older people in Europe. It aims to concretely improve the way care services for older adults are organised and delivered across Europe, and especially for those who have multiple health and social care needs. 

The project started from the observation that in all European countries, care for older people is often poorly coordinated. This prevents care from adequately meeting the needs of older adults, and it shows that quality of care and outcomes could be much improved. 

Concretely, the project will:

• Analyse the 14 care services by gathering data and by interviewing several persons who are involved (practitioners, users, policy makers, health insurers etc.).
• With a group of organisations (associations, groups, etc.) at local level, design and implement a set of improvements of the care service, with regards to key principles and values for quality of ...

Mapping dementia-friendly communities across Europe

‘Mapping dementia-friendly communities across Europe’ is a study commissioned by EFID (European Foundation's Initiative on Dementia) and undertaken by the Mental Health Foundation in 2014 and 2015.

The research originated from a shared interest, by the foundations engaged in EFID, to conduct an analysis of concepts and practices of what it is commonly referred to as ‘dementia-friendly communities’ (DFCs) and similar initiatives across Europe.

The aim of the report is to provide practical information, guidance and examples to support good practice around sustainable, inclusive and supportive environments for people living with dementia and their carers. The report is accompanied by an online collection of case studies that illustrate the diversity of ‘dementia-friendly community’ activity in Europe.

The executive summary of the study is available here: ‘Mapping dementia-friendly communities across Europe’ 

The full report is available here: “Mapping dementia-friendly communities across Europe: a study commissioned by EFID”. 

GPCC Person-centred care research centre web site

This research centre web site contains a range of information, films, presentations, resources and links; from basic information on person-centred care to information on a wide range of individual research projects from health and elderly care and rehabilitation. It also contains news, events, scientific publications and implementation.

The Gothenburg University Centre for Person-centred Care (GPCC) is an interdisciplinary research centre, established in January 2010, with the support of the Swedish government's strategic investment in health and care research. Uniquely GPCC has evaluated the effects of person-centred care in controlled studies. This has established that person-centred care is capable of enhancing the efficiency of the care process. Apart from considerable monetary savings resulting from amongst other things shorter hospital stays, significant positive effects from a patient perspective have been seen, as care is adapted to each individual person and his or her resources are made use of.

(A summary commentary ...

GPCC Person-centred care research centre web site

This research centre web site contains a range of information, films, presentations, resources and links; from basic information on person-centred care to information on a wide range of individual research projects from health and elderly care and rehabilitation. It also contains news, events, scientific publications and implementation.

The Gothenburg University Centre for Person-centred Care (GPCC) is an interdisciplinary research centre, established in January 2010, with the support of the Swedish government's strategic investment in health and care research. Uniquely GPCC has evaluated the effects of person-centred care in controlled studies. This has established that person-centred care is capable of enhancing the efficiency of the care process. Apart from considerable monetary savings resulting from amongst other things shorter hospital stays, significant positive effects from a patient perspective have been seen, as care is adapted to each individual person and his or her resources are made use of.

(A summary commentary ...

Integrated Diabetes Care: A Multidisciplinary Approach

Integrated care is an approach that seeks to improve the quality of care for people with diabetes by ensuring that services are well coordinated around their needs. Healthcare professionals, people with diabetes and the system must be aligned to support improvement both in the delivery of care and in achieving better outcomes for people with diabetes.

The State of Health Care Integration in Estonia

This paper summarizes an assessment of the state of health care integration in Estonia and its driving forces. In the absence of a widely accepted definition, this study defines health care integration as:

i) the delivery of care in the appropriate care setting and

ii) coordination and continuity of care across care settings.

The study focuses on integration issues related to the prevention and treatment of chronic diseases, with particular attention to the role and functioning of primary care and equity issues. The findings of this analysis therefore do not provide a comprehensive assessment of quality within specific care settings (i.e., primary care, acute inpatient care, etc.), nor of overall health system performance. Yet, they constitute one of several inputs that may be relevant for future policy changes.

These study findings are based on a quantitative analysis of health insurance claims data plus stakeholder interviews and focus group discussions ...

Longing for Integrated Care: The Importance of Effective Governance

"Integrated care is not about creating a multidisciplinary offer/supply, but it is about creating an integrative answerd to the most important issues of people in need. A holistic approach seems logical, but it means a lot of for how we organise our health care and welfare systems, and the needed connections with other domains in life"- Mirella M.N. Minkman

Read more...

Good collaborative practice: reforming capacity building governance of international health research partnerships

In  line with the policy objetives of the United Nations sustainable Development Goals, this commentary seeks to examine the extent which provisions of international health research guidance promote capacity building and equitable partnerships in global health research. Theri evaluation finds that governance of collaborative research partnership, in resource- constrained settigns is limited but has improved with the implementation guidance of the International Ethical Guidelines for Health- related Research Involving Humans by The Council for International Organizations of Medical Sciences (CIOMS 2016)

Good collaborative practice: reforming capacity building governance of international health research partnerships

In line with the policy objectives of the United Nations sustainable Development Goals, this commentary seeks to examine to which provisions of international health research guidance promote capacity building and equitable partnerships in global health research. This evaluation finds that governance of collaborative research partnerships, and in particular capacity building, in resource-constrained settings is limited but has improved with the implementation guidance of the International Ethical Guidelines for Health-related Research Involving Humans by The Council for International Organizations of Medical Sciences (CIOMS) (2016). 

Development of global health research in China

With the continuous deepening and broaddening of Chin´s engagement in global health as well as the transformation of its role in global health governance, global healh science have made great strides in China, from the infancy stage of last century to the grown-up stage of this century. Considerable progress in global health discipline has been witnessed, especially in the last ten years. This report analyse the three crucial indications that characterized the rapid development of global health in China

Defining the global health system and systematically mapping its network of actors

The global health system has faced significant expansion over the past few decades, including continued increase in both the number and diversity of actors operating within it. However, without a stronger understanding of what the global health system encompasses, coordination of actors and resources to addres today´s global health challenges will not be possible

The impact of cash transfers on social determinants of health and health inequalities in sub-Saharan Africa: a systematic review

Cash transfers (CTs) are now high on the agenda of most governments in low-and middle- income countries. Within the field of health promotion, CTs constitute a healthy public policy initiative as they have the potential to address the social determinants of health and health inequalities. A systematic review was conducted to synthesise the evidence on CTs´impacts on social determinants of health and health inequalities in sub-Saharan Africa, and to identify the barriers and facilitators of effective CTs.

Public involvement in health research systems: a governance framework

Growing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance.

Patient vs. Community Engagement: Emerging Issues

The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective engagement need to be examined to address conducting and accelerating comparative effectiveness research.
The objective was to examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance engagement.

Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies result in articles published in peer-reviewed journals that detail research findings and engagement’s role in research. To inform practices for engaging patients and others as research partners, this study analyzed 126 articles that described engagement approaches and contributions to research. PCORI projects engaged patients and others as consultants and collaborators in determining the study design, selecting study outcomes, tailoring interventions to meet patients’ needs and preferences, and enrolling participants. Many articles reported that engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance, while a few noted trade-offs of engagement. The findings suggest that engagement can support more relevant research through better alignment with patients’ and clinicians’ real-world ...

A compendium of tools and resources for improving the quality of health services

In an attempt to consolidate the work of the WHO Department of Service Delivery and Safety (SDS) on quality improvement, a SDS cross-cut team has produced a compendium of tools and resources on quality improvement, developed within the SDS, that are applicable for country support. It includes resources on IPCHS and community engagement among others. It also includes practical examples of how the tools and resources have been applied in-country, including relevant links with other areas, such as measurement.  Ministries of health, facility quality improvement teams, researchers, development agencies and any organization or individual working to improve the quality of health service delivery can benefit from this compendium.

Strengthening national health research systems in the WHO African Region – progress towards universal health coverage

Health challenges and health systems set-ups differ, warranting contextualised healthcare interventions to move towards universal health coverage. As such, there is emphasis on generation of contextualized evidence to solve local challenges. However, weak research capacity and inadequate resources remain an impendiment to quality research in the African region. WHO African Region (WHO AFRO) facilitated the adoption of a regional strategy for strengthening national health research systems (NHRS) in 2015. This article assessed the progress in strengthening NHRS among the 47 member states of the WHO AFRO.

Impact of health care reform on enrolment of immigrants in primary care in Ontario, Canada

Health is driven by the conditions in which people live and work. Immigrant populations face many challenges and disruptions in living conditions during their settlement process, including the loss of regular health services. Establishing a direct relationship with a family physician is an important aspect of the settlement process for immigrant populations

In 2003, Ontario introduced a patient enrolment system as part of health care reforms, aimed at enhancing primary health care services, but it is unclear whether immigrants have benefited from this health care reform. Therefore, this article studied whether this reform changed the extent of immigrants’ enrolment in primary care services in Ontario between 2003 and 2012.

From protocolized to person-centered chronic care in general practice: study protocol of an action-based research project (COPILOT)

The management of people with multiple chronic diseases challenges health care systems designed around single disease. Patients with multimorbidity often receive highly fragmented care that may lead to inefficient, ineffective and potentially harmful treatments and neglect of essential health needs. A more comprehensive, person-centered approach is advocated for persons with multiple morbidities. However, examples on how to provide more person-centered care and evidence of its impact are scarce.
The aim of this study was to develop a proactive person-centered care approach for persons with (multiple) chronic diseases in general practice, and to explore the impact on ‘Quadruple aims’: experiences of patients and professionals, patient outcomes and costs of resources use.

Non-communicable diseases in sub-Saharan Africa: a scoping review of large cohort studies

Non-communicable diseases (NCDs) cause a large and growing burden of morbidity and mortality in sub-Saharan Africa. Prospective cohort studies are key to study multiple risk factors and chronic diseases and are crucial to our understanding of the burden, aetiology and prognosis of NCDs in SSA. The aim of this study was to identify the level of research output on NCDs and their risk factors collected by cohorts in SSA.

Association of the Implementation of the Patient-Centered Medical Home with Quality of Life in Patients with Multimorbidity

The patient-centered medical home (PCMH) has clinical benefits for chronic disease care, but the association with patient-reported outcomes such as health-related quality of life (HRQoL) is unexplored in patients with multimorbidity (two or more chronic diseases). The aim o this study was to examine if greater clinic-level PCMH implementation was associated with higher HRQoL in multimorbid adults.

Mapping Evidence of Patients’ Experiences in Integrated Care Settings: A Protocol for a Scoping Review

Integrated care (IC) models have emerged to address gaps in care for individuals with complex healthcare needs. Although the clinical and cost-effectiveness of IC models are well-established, the understanding of whether IC models facilitate a patient-centred care experience from the patients’ perspective is not well understood. This scoping review aims to comprehensively map the literature to provide a broad overview of patients’ experiences in IC settings with a focus on the experiences of complex patients with comorbid mental and physical illnesses. It also aims to describe current gaps identified in the literature in our understanding of aspects of care that are often unrecognised.

Survey on what people value in integrated health services in the European region launched

In collaboration with the World Health Organization, Tilburg University and Vilans have launched a European survey researching what values matter to different people in integrated health services. The web-based survey is aimed at a broad variety of stakeholders: users, informal carers, professionals, managers, policymakers and researchers in the European region. The survey is available in English and will take no more than approximately 10-15 minutes to complete. All information recorded is confidential, and names are not being included.

It is of huge importance to include the views of informal carers in the study. So if you are an informal carer, an informal carer representative, a user representative, an advocate, or a professional/researcher in this field, please help them out by completing this survey. Your experiences and perspectives are very important and will be much appreciated.

The survey can be accessed via this link and will run until 31 January ...

Consultation on the Handbook on Social Participation for UHC for civil society

UHC2030, WHO and the UHC Partnership have launched a consultation for civil society to provide substantial feedback on the contents of the Handbook on Social Participation for UHC. The ‘Handbook on Social Participation for UHC’ will provide specific best practice guidance to policymakers on how to effectively and meaningfully engage with populations, civil society and communities for policy- and decision-making.

The Handbook is in an advanced stage of development and your views would be useful to shape the final document. Currently, you can comment on the overview of five of the chapters through a survey until February 2020.

See more information about the handbook and an overview presentation.

Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland

The National Clinical Programme for Epilepsy (NCPE) in Ireland aims to deliver a holistic model of integrated person-centered care (PCC) that addresses the full spectrum of biomedical and psychosocial needs of people with epilepsy (PwE). However, like all strategic plans, the model encompasses an inherent set of assumptions about the readiness of the environment to implement and sustain the actions required to realize its goals. In this study, through the lens of PwE, the Irish epilepsy care setting was explored to understand its capacity to adopt a new paradigm of integrated PCC.  

Integrated care pilots in England revisited

The purpose of this paper is to explore the outcomes identified by the evaluation of the national programme of integrated care pilots (ICPs) in England in the context of wider policies designed to deliver integrated care and to consider the challenges presented to policy makers and evaluators in distilling usable insights to promote effective policy.

Also, this paper considers why evaluation findings appear limited in their impact on policy in the field of integrated care. Views as to how evaluation might be undertaken so that it generates actionable insights are advanced.

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience.

How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field

Research funders in Canada and abroad have made substantial investments in supporting collaborative research approaches to generating and translating knowledge as it is believed to increase knowledge use. Canadian health research funders have advocated for the use of integrated knowledge translation (IKT) in health research, however, there is limited research around how IKT compares to other collaborative research approaches. The aim of this study was to better understand how IKT compares with engaged scholarship, Mode 2 research, co-production and participatory research by identifying the differences and similarities among them in order to provide conceptual clarity and reduce researcher and knowledge user confusion about these common approaches.

Celebrating the 4th anniversary of the approval of the WHO Framework on integrated and people-centred health services: progress and opportunities ahead

This month marks the fourth anniversary of the approval of the Framework on integrated people-centred health services (IPCHS) and its accompanying resolution WHA69.24 (2016) on “Strengthening integrated people-centred health services” by the World Health Assembly. In May 2016, Member States showed exceptional support to these global commitments and requested WHO to help them implement, adapt, and operationalize this Framework. However, this was not the first time WHO recognized the relevance of health services being managed and delivered so that people, who are active participants of health systems, receive a continuum of care according to their needs throughout the life course. Other previous WHO global and regional commitments, including “People-centred health care: a policy framework” produced by the Western Pacific Region in 2007, the “World health report 2008 on primary health care: now more than ever”, and resolution WHA62.12 (2009) on Primary health care, including health system strengthening, had ...

Self-management for chronic conditions in low- and middle-income countries: how can we know what works?

Self-management of chronic conditions is an approach to engaging people in their own health care. It places increased responsibility on the patient for monitoring their condition and their adherence to treatment. Wherever health systems are under resource strain, self-management is promoted as a means to increase patient investment in their treatment plan, thus improving treatment adherence and reducing use of costly services. Initiatives to support self-management have included text messaging reminders to monitor blood pressure or blood glucose, and community peer groups to support adherence to medications and lifestyle advice. More recently, the COVID-19 pandemic has further focused attention on self-management of chronic conditions, for example for vulnerable patients who are self-isolating.

Despite increased attention and resources devoted to self-management for chronic conditions, evidence of the effectiveness of self-management limited. This is particularly true in low- and middle-income countries, where self-management is proposed as one response to the challenges that ...

Learning from Gothenburg model of person centred healthcare

Providing person centred care is a growing imperative across healthcare. The core component of person centred care is the co-creation of care through partnership between patients, their families and carers, and health professionals. While much of the recent literature has focused on why we need to change to a more person centred approach with greater involvement of patients and the public in health and healthcare, little information is available on how to do it and whether it makes any difference. Over the past 10 years a model of person centred care has been studied and implemented in Sweden and has shown promising results. By providing practical insights from a successful initiative that has spread both nationally and internationally, we hope to offer lessons for readers elsewhere.

Research in Integrated Care: The Need for More Emergent, People-Centred Approaches

The International Foundation for Integrated Care (IFIC) recently celebrated its 20^th International Conference (ICIC20) through a virtual event that brought together patients and carers, academics, care professionals, NGOs, policy-makers and industry partners from across the global integrated care community.

The International Journal for Integrated Care (IJIC) used this opportunity to host a workshop on published research in integrated care, specifically to reflect on the quality of existing scientific enquiry. A lively discussion on the current state of integrated care research concluded that there remained significant shortcomings to current methodologies – for example, in their ability to provide the depth of understanding required to support the knowledge needed to best inform policy and practice, particularly when addressing people-centredness.

In part, the debate recognized how the nature of existing research funding, and prevailing attitudes and preferences towards certain research methodologies, were partly to blame (as has been noted by IJIC previously. The ...

e-Mental Health International Conference 2020

Delivering person-centred care through new technology

The Priority Research Centre for Brain and Mental Health Research (University of Newcastle, Australia), following their success in organising the e-Mental Health International Conference in 2016 and 2018,  once again brings the conference to you. Because of the COVID-19 pandemic, conference will be held online this year.

The conference will provide a forum focusing on applying information and communication technologies in person-centred strategies of mental health care. It will contribute to generating, verifying and refining theories and practices of employing technologies in person-centred care. Specific objectives are:

• To review initiatives in using information and communication technologies in person-centred care delivery.
• To reinforce the significance of evidence based e-health practice in promoting, maintaining and restoring health.
• To define critically the roles of e-health in attaining excellence in care and explore the issues related to these roles.
• To examine global and regional strategies of enhancing e-health ...

Training course in person-centred care is launched by GPCC researchers in the DR Congo

A training course in person-centred care has been carried out in the Democratic Republic of the Congo by researchers at The University of Gothenburg Center for Person-centred Care (GPCC) in Sweden. The course participants had various professions such as midwives, nurses and physicians. The researchers can report on a very positive reception and great commitment, with the potential to have a great future impact.

Integrated Care: Reflections on Change in Health Services

This book critically examines integrated care, looking at integration from an unconventional angle to reveal the tacit assumptions we make when we manage and change health services. Kaehne questions our premises on health services management, the motivations for change and the shortcomings of health policy in complex environments.

How to Get Published in Integrated Care Webinar

IFIC Australia in partnership with the International Foundation for Integrated Care (IFIC) and the International Journal of Integrated Care (IJIC) invite you to join for their next webinar, How to get published in Integrated Care, taking place Monday, 18 September.

About the Webinar

The How to Get Published in Integrated Care webinar is aimed at all those interested in promoting their research and practice in integrated are and writing scientific papers on their programs or initiatives. Whether you are an emerging researcher or an experienced, published academic, whether you are a professional or a consumer, this webinar will allow you to dig deep into the ins and outs of publishing with IJIC and the do’s and don’ts of scientific writing. Engage directly with leading names in integrated care, who will share their advice on how to get published.