For research into health and co-production, see also the resources on the Involve (NIHR) website.
Optimising the impact of health services research on the organisation and delivery of health services: a study of embedded models of knowledge co-production in the NHS (January 2018-June 2020)
The multi-method Embedded Research study aims to increase the influence of health services research in two main ways.
- First, we will develop the evidence base underpinning the nature and effectiveness of models of knowledge mobilisation, specifically where researchers operate (or are ‘embedded’) within NHS service settings and evidence is created in partnership i.e. ‘co-produced’ by researchers, practitioners and people who use services.
- Secondly, we will develop practical guidance on the design and implementation of embedded models of knowledge co-production for managers and clinicians in the NHS, its academic partners and people who use health services.
As part of this NIHR funded project the St Andrews team have been responsible for conducting a literature review of knowledge co-production alongside work to review and identify different models of embedded research. We have also used co-design as part of our work.
Project website: https://www.embeddedresearch.org/
Project documentation: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/165221/#/
Co-design Workshop Report: https://www.embeddedresearch.org/uploads/8/0/2/1/80213224/embedded_researcher_codesign_workshop_summary.pdf
Keywords: knowledge mobilisation, knowledge co-production, embedded research
Contributed by: Vicky Ward, Huw Davies, Benet Reid, Tricia Tooman – University of St Andrews
Mobilising knowledge across health and social care boundaries (May 2014-April 2017)
As part of this NIHR funded Knowledge Mobilisation Research Fellowship I worked with other researchers and project participants to co-produce a series of stories about knowledge sharing.
These were produced using a creative hermeneutic data analysis process.
Keywords: knowledge mobilisation, integrated care, health care, social care, data analysis
Contributed by: Vicky Ward – University of St Andrews
PhD. Transitions in Care: Information needs concerning the discharge from hospital of an older person (2018-2021)
This PhD will explore the expectations and information needs of older adults (including people living with dementia), family members and kin/non-kin carers around hospital discharge into the community (social care). Drawing on several different research methods, the PhD will:
- Undertake a review of the existing research in this area to identify gaps in what we already know.
- Observe how information is given to older people and their families and carers as part of the discharge process in a hospital.
- Examine the information given to older people at discharge from the hospital
- Undertake interviews with older people and their families to see how their expectations and need for information differ from what is currently provided.
- Work with older people, family carers and other key health and social care staff to co-produce appropriate discharge information.
Keywords: co-produce, information, discharge planning, older people
Links currently unavailable
Contributed by: Catherine Launder, Swansea University, Centre for Innovative Ageing
CHILDREN AND YOUNG PEOPLE’S HEALTH
ASSIST+Frank: Adapting the ASSIST model of informal peer-led intervention delivery to the Talk to Frank drug prevention programme in secondary schools (2014 – 2016)
The ASSIST + Frank study aimed to adapt an existing effective peer-led smoking prevention intervention (ASSIST), integrating new content from the UK drug education resource Talk to Frank (www.talktofrank.com) to co-produce two new school-based peer-led drug prevention interventions. A three-stage framework (evidence review and stakeholder consultation, co-production, prototyping) was tested to adapt and develop intervention content and delivery methods in collaboration with key stakeholders to facilitate implementation.
This three-stage framework extends current guidance on intervention development by providing step-by-step instructions for co-producing and prototyping an intervention’s content and delivery processes prior to piloting and formal evaluation.
This framework enhances existing guidance and could be transferred to co-produce and prototype other public health interventions.
Development of a framework for the co-production and prototyping of public health interventions, BMC Public Health 17, 2017, Jemma Hawkins, Kim Madden, Adam Fletcher, Luke Midgley, Aimee Grant, Gemma Cox, Laurence Moore, Rona Campbell, Simon Murphy, Chris Bonell, James White
Keywords: intervention development, drug prevention, adolescence, co-production, transdisciplinary action research
Contributed by: Jemma Hawkins – Cardiff University, DECIPHer (Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement)
CHILDREN AND YOUNG PEOPLE’S HEALTH AND WELLBEING
PhD: Co-production of wellbeing interventions in secondary schools (October 2018 – Oct 2021)
The PhD research has two interlinked aims:
- to produce guidance for the using co-production in the development of school-based health interventions. This will support researchers and members of the public in co-producing quality health interventions, and provide research funders and peer reviewers with criteria to assess the quality of co-production in research bids.
- to support students to co-produce substantive theories of how to tackle wellbeing in schools. The aim is to compare the co-produced wellbeing theories with the current research evidence base, to see if stakeholders highlight theoretical gaps.
I will conduct a realist review of previous studies of co-produced school-based health interventions, and undertake case study primary research with two secondary schools that use co-production to develop wellbeing interventions.
The research questions are:
- What co-production processes are currently used in school-based health intervention development?
- What contextual factors and mechanisms are necessary for a successful co-production process ?
- What wellbeing targets and what processes of change do these co-produced interventions focus on?
- Do the targets and processes of change highlight theoretical gaps in our understanding of wellbeing?
Keywords: wellbeing interventions, co-production, secondary schools
Links currently unavailable
Contributed by: Hayley Reed – Cardiff University, DECIPHer (Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement)
NETWORK: HEALTH RESEARCH: YOUNG PEOPLE
ALPHA: young people’s research group (2010 – ongoing)
ALPHA (Advice Leading Public Health Advancement) was set up in 2010. It is a voluntary group of young people who advise researchers by discussing and debating their views on health topics and on proposed research topics. In addition, ALPHA facilitates, monitors and evaluates the involvement of children, young people, parents and carers in directing individual research projects. We use data collected about the involvement process to contribute to the evidence base for effective public involvement in health improvement research.
Projects include research on alcohol advertising, drug prevention, school-based health promotion, sexual health, and suicide and self-harm.
Filter FE Challenge – Smoking cessation intervention in further education
The Jack Trial – Teenage boys and teenage pregnancy reduction
ALPHA – a young people’s research advisory group. INVOLVE Newsletter Winter 2014-5, Hayley Reed, Oliver Sanders
Involving children and young people in research. (presentation) Involving People Annual Meeting 2015, Hayley Reed
Keywords: young people, public involvement, public health research, health
Contributed by: Hayley Reed, Cardiff University – DECIPHer (Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement)
HEALTH & WELLBEING: CHILDREN & YOUNG PEOPLE
Pregnancy and parenthood for young people in and leaving care. (2014 – 2019)
This project examines what happens when young people in and leaving care become parents. The idea for the research came from young people involved with Voices from Care Cymru. Over time the organisation had become increasingly concerned that young people who became parents were disproportionately likely to experience social work assessment and / or intervention, and were inadequately supported as parents.
The research incorporates several phases. This has included opportunities for parents to participate and share their experiences and view. In addition the research has been supported by an advisory group of parents for its duration.
Project report to come: http://orca-mwe.cf.ac.uk/view/cardiffauthors/A113591B.html
Keywords: pregnancy, parenting, looked after children, care leavers, outcomes
Enabling talk and reframing messages: Working creatively with care experienced children and young people to recount and re-represent their everyday experiences. Child Care in Practice 25, 2019, Dawn Mannay, Eleanor Staples, Sophie Hallett, Louise Roberts, Alyson Rees, Rhiannon Evans, Darren Andrews
Contributed by: Louise Roberts, Cardiff University, CASCADE (Children’s Social Care Research and Development Centre)
User-centred healthcare design (2009 – ongoing)
The National Institute for Health Research (NIHR) and Collaboration for Leadership in Applied Health Research and Care (CLAHRC) are involved in collaborative partnerships between the National Health Service, public services and Higher Education Institutions. The collaborations are focused on improving patient outcomes through the conduct and application of applied health research and evidence-based implementation.
User-centred healthcare design (UCHD) is a theme within this collaboration. UCHD is changing the way health services are designed to enable people to take an active role in their own health care. The approach brings together patients, healthcare staff, families and communities to explore and understand the real-life experiences of healthcare. That experience-based knowledge is used to drive innovation and improvement in healthcare service delivery.
As well as the overarching ‘Better Services by Design’ initiative, we are involved in supporting young people to self-manage type 1 diabetes and working with older people to improve outpatient services.
Keywords: co-design, design thinking, healthcare design
Project website: www.uchd.org.uk
Young people with diabetes: Developing digital tools and services that support young people to self-manage type 1 diabetes.
Better Outpatient Services for Older People (BOSOP): Improving services at the Royal Hallamshire Hospital in Sheffield.
Contributed by: Daniel Wolstenholme – NIHR CLAHRC South Yorkshire Sheffield Teaching Hospitals NHS Foundation Trust
HEALTH: OLDER PEOPLE
The future of health care services in the European Union faces the triple challenges of aging, fiscal restriction, and inclusion. Co-production offers ways to manage informal care resources to help them cater for the growing needs of elderly people. Social media (SM) is seen as a critical enabler for co-production.
The purpose of this study was to investigate how SM—private Facebook groups, forums, Twitter, and blogging—acts as an enabler of co-production in health and care by facilitating its four underlying principles: equality, diversity, accessibility, and reciprocity.
We concluded that SM uses afford new forms of organizing and collective engagement between patients, carers, and professionals, which leads to change in health and care communication and coordination.
Keywords: e-health, social media, social networking, digital health, co-production, co-delivery, health informatics
Contributed by: Hadi Daneshvar, University of Dundee
How should we tackle health inequalities? (2016-2017)
This Leverhume Trust project aimed to involve the public in responding to what a top medical journal has called the ‘disappointing reality’ of widening health inequalities, despite a vast amount of research and policy activity. Key aims:
- To get a sense of what members of the UK public think about health inequalities and potential policy responses;
- To assess whether these views seem to vary by gender, socio-economic position, geographic location or party political preferences;
- To compare these findings with existing research on public understandings of health inequalities in the UK;
- To explore whether people’s views seem to change when they are provided with an opportunity to engage in a deliberative debate about tackling health inequalities with researchers, practitioners and advocates.
- To consider whether the project offers any insights about how best to meaningfully engage members of the public in discussions about health inequalities in the UK.
We reviewed existing research exploring public understandings of health inequalities and commissioned a national survey of a stratified random selection of people living in the UK (work undertaken by Opinium in Summer 2016)
We held three two-day Citizen Juries in Glasgow, Liverpool and Manchester at which all participants were asked to complete individual questionnaires about health inequalities and to engage in deliberative discussions about the topic. The Juries were followed up with a final round of questionnaires to explore whether participants’ thoughts about health inequalities have changed further since the end of the juries.
Keywords: health inequalities, citizen juries, deliberative debate, citizen participation
Project website: http://www.healthinequalities.net
Contributed by: Kat Smith, Rosie Anderson, Oliver Escobar, Rebecca Hewer – Edinburgh University
Translational research with novel foods to engage head and neck cancer survivors in eating: a proof of concept study (January 2014-June 2016)
This study, funded by NIHR Research for Patient Benefit, investigated whether new approaches to food and cooking could help survivors of head and neck cancer with their food-related concerns (what we have come to call ‘altered eating’).
The research approach was collaborative and co-productive from the outset, including development of the proposal, analysis (with a participant being trained in qualitative analysis), and dissemination/impact (e.g., co-authorship and co-presentation). Over the course of 6 years in participant-led food workshops, we worked alongside 25 head and neck cancer survivors and their partners, employing video-reflexive ethnographic methods.
The current study reports on data from the two summative workshops of this series where we worked with participants to cohere the emergent themes. Video and transcripts were reviewed and coded with participants and stakeholders according to domains of life that were affected by food. Three of the authors, one of whom is both survivor and researcher, arrived at the consensus framework.
Keywords: cancer survivors, altered eating, novel foods
Altered eating: a definition and framework for assessment and intervention. BMC Nutrition 4:14. 2018, Dulka Burges Watson, Sue Lewis, V.Bryant, Joanne Patterson, Charles Kelly, Rachel Edwards-Stuart, Madeline Murtagh, Vincent Deary
Related link: Altered Eating Research Network
The Network formed in 2018 to address difficulties around food and eating in a comprehensive way and as a trans-diagnostic concern. The Altered Eating Framework addresses the physical to the social and emotional consequences alongside broader contexual issues that may result in Altered Eating difficulties including climate change impacts on the availability and cost of food, economic and social change, and the sensory experience of ‘ultra-processed’ foods.
Contributed by: Duika Burges Watson – Newcastle University, Sue Lewis – University of Durham
Reframing participation and inclusion in public health policy and practice to address health inequalities (ongoing)
There is a need for greater conceptual clarity in place‐based initiatives that seek to give residents of disadvantaged neighbourhoods more control over action to address the social determinants of health inequalities at a local level. In this article, we address this issue as it relates to the concepts of participation and inclusion. We draw on qualitative data generated during the first phase of the Communities in Control Study, a longitudinal multisite independent evaluation of the impact of Big Local on the social determinants of health and health inequalities. Big Local is a resident‐led area improvement initiative in England, funded by the UK Big Lottery Fund. Initiatives focused on community empowerment are increasingly prominent in public health policy and practice globally. Approaches emphasise the promotion of greater control over decisions and action among individuals, groups, and communities, particularly those living in disadvantaged circumstances. However, when it comes to participation and inclusion in taking action and making decisions, the field is characterised by conceptual confusion. This risks undermining the impact of these initiatives. While participation and inclusion are necessary conditions for empowerment and collective control, they are not necessarily sufficient. Sufficiency requires attention to the breadth of participation (i.e., to inclusion) and to the depth of participation (i.e., the extent to which it is experienced as empowering and ultimately enables the exercise of collective control over decisions and actions).
In observing how different Big Local resident‐led partnerships across England are tackling the day‐to‐day challenges of engaging with their communities, we reveal the potential for policy and practice of reframing, and therefore clarifying (to highlight the different roles they have) the concepts of participation and inclusion in terms of depth and breadth.
Keywords: public health policy, citizen participation, inclusion, empowerment, collective action
Reframing “participation” and “inclusion” in public health policy and practice to address health inequalities: Evidence from a major resident-led neighbourhood improvement initiative. Health & Social Care in the Community 27:1 2019 Susan Lewis, Clare Bambra, Amy Barnes, Michelle Collins, Matt Egan, Emma Halliday, Lois Orton, Ruth Ponsford, Katie Powell, Sarah Salway, Anne Townsend, Margaret Whitehead, Jennie Popay
Contributed by: Sue Lewis – University of Durham
Mobilising evidence on stroke service organisation: co-design, implementation, and evaluation of a knowledge mobilisation bundle (September 2017-August 2020)
This project aims to help to increase the use of evidence on stroke service organisation at national policy and local service levels, and improve understanding of how evidence comes to be reflected in common healthcare practice. My research will address the following questions:
- What is currently done to help people use evidence about organisation of stroke services in national policy and local stroke services?
- In what ways can different approaches to sharing evidence help people make use of the evidence?
- Use qualitative methods to analyse current approaches to sharing evidence about organisation and delivery of stroke services.
- Work with national and local stakeholders to co-design approaches to sharing evidence that are accessible to a wide range of people and learning styles (e.g. traditional text briefings, infographics, cartoons, web-resources, workshops, and group discussions
- Implement this bundle to facilitate use of research evidence at national policy and local service levels, and evaluate how the bundle works in practice.
Keywords: co-design, hospital stroke services, major system change, knowledge mobilisation
Links currently unavailable
Contributed by: Angus Ramsey – University College London
Measuring Humanity (2013 – ongoing)
Measuring Humanity calls for a re-conceptualisation of the public health evidence-base to include crucial forms of creative and relational data about communities’ lived experiences. The project aims to build on communities’ strengths rather than deficits through co-production between service providers and service users.
A co-produced methodological approach in the form of an Asset-Based Indicator Framework (ABIF) offers a mechanism with core indicators for identifying and capturing ‘soft’ changes in health, wellbeing and inequalities when asset-based approaches are applied through creative community engagement (anything from theatre to gardening; music and comedy to knitting groups and beyond). If co-produced with a marginalised community, it helps us understand and evidence the reasons underpinning inequality for that community (at individual, community and structural levels). It also helps us to identify the outcomes community members want to achieve to improve their health and change their circumstances; to examine the relationships between inequalities, empowerment and health outcomes; reveal changes over time; monitor effectiveness; and to show how these outcomes may link to local, national and international targets, measures and policies.
Through the provision of training and seminars, the project has brought about change in the perceptions of various professional stakeholders, third sector engaged in community working and policy makers about the way in which they understand evidence and the ways in which they measure health and inequalities.
Keywords: public health, wellbeing, inequalities, communities, methodological framework, asset-based research
Measuring Humanity website: https://measuringhumanity.org/
Jargon-busting resource: https://measuringhumanity.org/policy-whispers
Evaluating and evidencing asset-based approaches and co-production in health inequalities: measuring the unmeasurable? Critical Health, Marisa de Andrade, Nikolina Angelova
Contributed by: Marisa de Andrade – University of Edinburgh
Public sectors have responded to grand societal challenges by establishing Collaboratives – new inter-organisational partnerships to secure better quality health services. The nature and organisational form of such improvements is still a subject of debate within the public-sector literature. Placed-based collaboration has been proposed as a possible solution. Our research paper presents the results and findings of a placed-based collaborative network, highlighting challenges and insights.
We found that leadership, data-enabled learning through system-wide training and development, and the provision of an enabling environment that is facilitated by an academic partner, can go a long way in the managing of healthcare networks for improving quality. Regardless of the tensions and challenges with placed-based networks, we suggest they offer a more innovative structure that can help to address complex issues beyond the remit of hierarchical structures.
Change and reform in the healthcare system, and policy determination to reduce costs has now necessitated a rethink and more innovation for this sector. Leadership needs to strengthen professionals who have the dual responsibility for ensuring the quality and effectiveness of healthcare and this requires new organisational forms beyond the traditional hierarchical structures. Drawing upon strategic management and leadership discourse to underpin the study into sustainable and high performing healthcare systems, we present seven key lessons (propositions) from a mixed-methods study of a city-wide collaboratives in Leeds, UK.
Our study suggested that the sustainability of such collaboratives, requires a more effective structure that could be local city-wide collaborative in contrast to national/regional collaboratives. However, there are also several unknowns in such novel organisational structures. The study also finds that both an energetic strategic leader and promotion of professional learning cultures are vital for the sustainability of such collaboratives.
Keywords: inter-organisational collaboration, healthcare, placed-based network, leadership, qualitative study, case study
Innovation and sustainability in a large-scale healthcare improvement collaborative – seven propositions for achieving system-wide innovation and sustainability. (2016) International Journal of Sustainable Strategic Management, 5:2. 2016
Contributed by: Rebecca Malby – London South Bank University, Nii Amoo – Leeds Beckett University, Kieran Mervyn – University of Roehampton
NIHR CLAHRC West: Applied Health Research
Our applied health research aims to provide equitable, appropriate, and sustainable health and care across the West. We undertake projects that improve the management of chronic health conditions, mental health, public health interventions and population health.
All our research projects have the cross-cutting themes of evaluation, patient and public involvement, and training and capacity building, running through them.
Keywords: applied health research, chronic conditions, mental health, population health
Projects included in this resource:
- Working with Bristol Somali community to improve outcomes for children with autism
- Co-producing resources and guidance for sharing power in research
- Reach West: facilitating participation in research by patients and the public
Contributed by: Michelle Farr – Bristol University, Rosie Davies – University of the West of England