For research into health and co-production, see also the resources on the Involve (NIHR) website.
Exploring co-production, co-creation and co-design in the context of implementation, adoption and knowledge mobilisation. (2014-2017)
This NIHR knowledge mobilization project is exploring the synergies and potential benefit that creative practices from the field of design and co-design might have for health sciences research with respect to developing implementable healthcare interventions. It’s about creative, collaborative research processes that make research findings easier to use.
In our ‘Collective Making’ paper, we consider the implications of the shift from simple, linear models of research knowledge production and action to more iterative and complex models. These aim to blend multiple stakeholders’ knowledge with research knowledge to address the research-practice gap. It has been suggested there is no ‘magic bullet’, but that a promising approach to take is knowledge co-creation in healthcare, particularly if a number of principles are applied. These include systems thinking, positioning research as a creative enterprise with human experience at its core, and paying attention to process within the partnership. This discussion paper builds on this proposition and extends it beyond knowledge co-creation to co-designing evidenced based interventions and implementing them. Within a co-design model, we offer a specific approach to share, mobilise and activate knowledge, that we have termed ‘collective making’. We describe how collective making creates the right conditions for knowledge to be mobilized, helps to discover, share and blend different forms of knowledge from different stakeholders, and puts this blended knowledge to practical use allowing stakeholders to learn about the practical implications of knowledge use and to collectively create actionable products. We suggest this collective making has three domains of influence: on the participants; on the knowledge discovered and shared; and on the mobilisation or activation of this knowledge.
Related publications:
‘Collective making’ as knowledge mobilisation: the contribution of participatory design in the co-creation of knowledge in healthcare, BMC Health Services Research 2018, Joe Langley, Daniel Wolstenholme, Jo Cooke
Co-designing project planning and guidance support for people embarking on embedded researcher initiatives: workshop report, Joe Langley, Rebecca Partridge
Keywords: co-production, co-creation, participatory design, empowerment, co-design, healthcare
Contributed by: Joe Langley, Sheffield Hallam University Lab4Living, and Daniel Wolstenholme & Jo Cooke, NIHR CLAHRC YH, Sheffield Teaching Hospitals
Who cares if bleeding gums worsen diabetes and heart disease? Development of co-production to scale up efficacy study to community level. (2018 – ongoing)
Our initial research revealed that treating severe gum disease can improve diabetes outcomes and cardiovascular risk factors similarly to adding a second hypoglycaemic drug.
We are now investigating and embedding co-production in scaling up the research into a large community-based consortium trial. The intention is to design and conduct a large intervention trial (more tan 3000 patients to be recruited). The main aim would be to demonstrate that managing gum problems would not only improve blood sugar and metabolic control in patients with diabetes but would also reduce the number of serious health problems they might develop over 2-3 years follow-up (including major events like heart attacks or strokes and other major health problems).
We are working with a national consortium of dental centres (ProSPECT) who will all deliver the same protocol for gum disease management and liaise with diabetes and cardiac experts to help participants. It is a major undertaking and we are hoping to receive support from the National Institute of Health and Research of the NHS and major charities (including Diabetes UK and British Heart Foundation).
Members of the public have been actively involved in designing the study, selecting the relevant outcomes and agreeing future dissemination plans.
Keywords: diabetes, oral health, periodontal diseases, inflammation, co-production
Contributed by: Ian Needleman, Francesco D’Aiuto, University College London, Centre for Co-production in Health Research, Eastman Dental Institute
Co-producing the dental nurse training programme for Wales: part of the development of the All Wales Dental Faculty
This project has been driven by the chief dental officer for Wales and a contract reform process. It is being support by researchers from Bangor University. The co-production process is being led by ourselves.
Report to come.
Contributed by: Joe Langley, Rebecca Partridge, Sheffield Hallam University, Lab4Living
Function First – what is the role of primary care in maintaining physical function and physical activity for people with long term conditions. (ongoing)
This project is using a realist review methodology with creative co-production, to explore what works for whom, in what contexts – with respect to the title (maintaining physical activity and physical function)
We are using creative methods of co-production to include patient representatives and primary care healthcare professionals in all aspects of the research process from initial theory building (using Lego Serious Play) to intervention development.
Links to come.
Contributed by: Joe Langley, Rebecca Partridge, Sheffield Hallam University Lab4Living www.lab4living.org.uk
Co-designing community stroke services
We are working with healthcare professionals from acute and community stroke services, along with people who have previously had a stroke, Stroke Association, CCG representatives and health and fitness industry representatives to co-design post-hospital stroke services, including all options that encourage people into physical activity as soon as possible after leaving hospital.
Links to come.
Contributed by: Joe Langley, Remi Bec, Sheffield Hallam University Lab4Living www.lab4living.org.uk
There are an estimated 2000 children in the UK living with a form of limb loss and many will use upper and/or lower limb prosthetics from an early age. However, product and service provision for these children is usually based on scaled-down versions of adult prosthetics, which often do not meet their unique functional, social and emotional needs.
Starworks, funded by DoH/NIHR, responded by engaging with industry (makers of prosthetics, orthotics services providers) NHS staff, children with prosthetics and families, charities, universities and academics. We work together to explore unmet needs of the children, their families and the service providers, to generate ideas and catalyse innovation projects in order to develop solutions.
Follow-on funding has been awarded to allow Starworks 2 to continue to support co-research and co-creation in this important area.
Keywords: co-research, co-design, network, children’s prosthetics
Contributed by: Joe Langley, Gemma Wheeler, Sheffield Hallam University Lab4Living www.lab4living.org.uk
Head-Up: development of a novel neck orthosis for people living with Motor Neurone disease.
This project worked with people living with MND, and MND specialist healthcare professionals, industry partners etc to co-produce a novel neck orthosis. The project originated from a group of people living with MND who said that the neck orthoses they were supplied with did not meet their needs. We embarked on a piece of work with them and the MND association to validate the scale of this problem and then began a co-design process with the same group of patients.
Following the iterative prototyping process, the HeadUp collar was patented. It has undergone multi-centre clinical evaluation with results indicating that the product meets user requirements and showed an increase in the number of hours the collars are used, compared to existing neck orthoses.
Keywords: co-research, co-design, co-evaluation, neck orthosis, motor neuron disease
Contributed by: Heath Reed, Joe Langley, Andy Stanton, Sheffield Hallam University Lab4Living www.lab4living.org.uk
Community Parkinson’s services for Devon and Cornwall (ongoing)
This project was led by the Clinical lead for Parkinson’s services in Plymouth Universities Hospital in collaboration with local authority community services for Devon and Cornwall. We worked with the healthcare professionals from acute and community care settings, people with Parkinson’s and their partners, Parkinsons UK charity and a finance officer who held the purse strings for a new, joined up services across the two counties.
We led this group through a series of creative activities to explore experiences, identify areas for improvement, develop ideas, create prototypes for them and put them into place. One technological outcome from the project (a patient monitoring device aimed at helping patients self-monitor and to only request staff support when required) has gone on to secure follow-on funding from the Health Foundation to pilot. We will be continuing to use co-production to develop staff and patient training packages for this.
This has been funded in 2 phases. Phase 1 by pharmaceutical company Bial and phase 2 funded by the Health Foundation.
Links to come.
Contributed by: Joe Langley, Rebecca Partridge, Sheffield Hallam University Lab4Living & Art and Design Research Centre www.lab4living.org.uk
Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement. (2014)
Measuring, understanding and improving patients’ experiences is of central importance to health care systems, but there is debate about the best methods for gathering and understanding patient experiences and how to then use them to improve care. Experience-based co-design (EBCD) has been evaluated as a successful approach to quality improvement in health care, drawing on video narrative interviews with local patients and involving them as equal partners in co-designing quality improvements. However, the time and cost involved have been reported as a barrier to adoption.
We used a national video and audio archive of patient experience narratives to develop, test and evaluate a rapid patient-centred service improvement approach (‘accelerated experience-based co-design’ or AEBCD). We found that accelerated experience-based co-design generated a comparable but more rapid set of improvement activities and that the national film acted as an effective trigger to the co-design process.
Additional funding allowed further trigger films to be produced from the archived material, including Quality Time: experience-based co-design in the emergency department.
Project report: https://www.ncbi.nlm.nih.gov/pubmed/25642558
Trigger films: http://www.healthtalk.org/peoples-experiences/improving-health-care/trigger-films-service-improvement/topics
Keywords: EBCD; patient experience; accelerated EBCD
Contributed by: Louise Locock, University of Aberdeen
Drawing straight lines along blurred boundaries. Qualitative research, patient and public involvement in medical research, co-production and co-design. In press Evidence and Policy 2019
Biomedical research policy in many countries has adopted the principle of active involvement in research. However, how different approaches to involvement such as patient and public involvement/engagement (PPIE), qualitative research, participatory research, co-design and co-production sit alongside each other, is contentious and unclear. There has also been a subtle shift in the discourse, with the language of co-design and co-production used more widely in debates about involvement. This shift has reignited debates about what counts as meaningful involvement.
In this paper we seek to contribute to this debate by exploring boundaries and overlaps between them. We suggest that they share some underpinning philosophies and all are prone to be challenged on the grounds of tokenism despite avowed good intentions. We argue that these different approaches are not necessarily as distinct as is often advocated and question whether there is merit in this family of marginalised approaches working more collaboratively to give patient voices greater traction. At the same time, we recognise that this creates challenges and tensions.
Link to come.
Keywords: patient involvement, participatory research, co-design, co-production, qualitative research
Contributed by: Louise Locock, University of Aberdeen
Describing and enhancing audit and feedback in dementia care in acute hospitals: a co-production study (2017-2020)
About a quarter of patients in hospital have dementia. These patients do not always receive best care. Hospitals use audit and feedback to improve care. Audit and feedback involves assessing care and letting those responsible for care know how it compares to a standard. Audit and feedback can lead to large improvements in care, but often it does not.
I am working as part of a co-production group involving people with experience of dementia, clinicians and staff leading clinical audit. Together we are using interviews, observations and documentary analysis to describe how audit and feedback is currently done as part of the care for people with dementia in acute hospitals. We will then use ideas (theory) and evidence to co-produce enhancements audit and feedback. We will test whether it is possible to implement these enhancements.
Project overview:
https://www.ncl.ac.uk/ihs/staff/profile/michaelsykes.html#background
Keywords: co-production, health, audit, feedback, dementia, improvement
Contributed by: Michael Sykes, Newcastle University
PhD. Starting a family when you have inflammatory arthritis: co-designing an intervention to enable patient-healthcare staff co-production of preconception care. (October 2018 – September 2021)
My research is in improving preconception care for women with Long-term Life Limiting Illnesses (LTLIs), specifically those with inflammatory arthritis. The PhD project involves multi-disciplinary stakeholder groups at all stages, and seeks to co-design a useful tool to enable women to co-produce their own family planning care.
I am currently conducting a realist review of the literature relating to how co-production and aspects of co-production are used in preconception care, with a special focus on where it’s used with patients with long-term chronic conditions (those which include difficulties with pain, mobility, and the use of teratogenic medications – including inflammatory arthritis, cystic fibrosis, epilepsy and others). I shall be interviewing women with inflammatory arthritis, their partners (invited at the patients’ discretion and partners consent), and staff who work with this patient population. I also hope to conduct a focus group at the British Society for Rheumatology conference in May.
I will be analysing this information using a social phenomenological framework. The results of these two pieces of work will be shared with the stakeholder group so together we can design the intervention to enable women with inflammatory arthritis to co-produce their own preconception care. The intervention will then be piloted with a new group of this patient population and their healthcare providers.
Links to come.
Keywords: co-production, co-design, Inflammatory Arthritis, preconception, long-term limiting illnesses
Contributed by: Zoë Abbott, Cardiff University
Psychological support to enhance attendance and outcomes in women’s health physiotherapy. (2009 – ongoing)
Physiotherapy is NICE-recommended first-line treatment for pelvic-floor dysfunction (PFD) that affects 25% of women. It is safe, effective, and cost-efficient, but many women either do not take it up or do not complete treatment. We have developed novel screening-tools predicting attendance, and psychological-support programmes promoting treatment-compliance and co-production, that have increased patient-adherence and attendance by 60%, enhanced clinical-outcomes by 50%, and produced NHS-savings of approximately £1,000 per patient in Abertawe Bro Morgannwg (ABMU) Health Board.
Our interventions have been discussed in Government, trialed and adopted by UK Health Boards, and are promoted by the Pelvic, Obstetric, and Gynaecological section of the UK Chartered Society of Physiotherapy with a view to national roll-out.
A project website is under construction.
Project overview: https://www.youtube.com/watch?v=kORZS5QMRF4
Related publications:
Health, work and spirituality values predict attendance at pelvic floor muscle training sessions. Journal of Pelvic, Obstetric and Gynaecological Physiotherapy 121,. 2017. Lisa Osborne, C.Mair Whittall, Hannah Hanratty, Simon Emery, Phil Reed
Randomized Controlled Trial of the Effect of a Brief Telephone Support Intervention on Initial Attendance at Physiotherapy Group Sessions for Pelvic Floor Problems. Archives of Physical Medicine and Rehabilitation 98:11, 2017. Lisa A. Osborne, C. Mair Whittall, Ruth Emanuel, Simon Emery, Phil Reed
Keywords: women’s health physiotherapy, pelvic floor dysfunction, psychological predictors and support, pelvic floor muscle training, attendance and concordance, co-production
Contributed by: Phil Reed, Swansea University; Lisa A. Osborne, Abertawe Bro Morgannwg University Health Board
Understanding the role of patient volunteers in the redesign of respiratory services (2017-2018)
I am undertaking research with a Trust in England to introduce and evaluate the involvement of patients in the redesign of information used in Pulmonary Rehabilitation.
We are working with patient volunteers to understand their role in improving patient experience of respiratory services – pulmonary rehabilitation.
Paper presented at the 2018 International Society for Quality in Health Care conference.
Link to come.
Related publication: Experience based co-design to improve a Pulmonary Rehabilitation Programme. (in press) International Journal of Health Care Quality Assurance 33. Sharon Williams, Alice Turner, Helen Beadle
Keywords: co-production, volunteers, patient involvement, respiratory services, information co-design
Contributed by: Sharon Williams, Swansea University
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