Experience-based Co-design Approach Research Articles

Understanding and using experiences of social care to guide service improvements: translating a co-design approach from health to social care.

Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. This trial is registered as Current Controlled Trials ISRCTN98646409. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.

After Visit Summary: An Experience-Based Co-Design Approach to Improving the Patient Experience Related to Discharge Instructions in the Perioperative Setting

After Visit Summary: An Experience-Based Co-Design Approach to Improving the Patient Experience Related to Discharge Instructions in the Perioperative Setting

Mobilizing exercise recommendations for people with bone metastases: An experience-based co-design approach.

e23241 Background: People with bone metastases have historically been advised to limit exercise due to potential risks, such as fractures. Although published exercise recommendations by the International Bone Metastases Exercise Working Group emphasize regular exercise may benefit people with bone metastases, adopting guidelines into clinical practice remains challenging. Our study aims to use an experience-based co-design (EBCD) approach to collaborate with knowledge users (KUs) to develop knowledge mobilization (KM) products and a dissemination plan to promote the adoption of exercise recommendations for people with bone metastases. Methods: Three KU groups participated in EBCD: patient/family partners, oncology healthcare providers (e.g., physicians, nurses, allied health), and community-based exercise professionals (e.g., physiotherapists, exercise physiologists). Through four facilitated meetings, KM products were co-created and a dissemination strategy was planned. A survey of exercise professionals was used to collect further information on professional development (PD) preferences. Results: Twenty-nine KUs from five Canadian provinces participated (n = 10 patient/family partners, n = 9 healthcare providers, and n = 10 exercise professionals). KM products prioritized for co-development were: 1) a patient education handout; 2) patient education videos; 3) a clinical communication tool; and 4) PD resources for exercise professionals and healthcare providers. Finalized KM products will be presented at the meeting. A total of 183 international exercise professionals completed the PD survey, with 80% indicating that more PD resources were needed for bone metastases, focusing on exercise safety, feasibility, and prescription considerations. The dissemination plan will involve partnerships with Canadian and international organizations. Conclusions: Collaborating with KUs through EBCD may enhance KM product development and maximize utility and acceptability compared to researcher-designed products. Our KM products, tailored to support people with bone metastases to exercise safely, may also increase healthcare providers' and exercise professionals' satisfaction by improving the quality of information they can offer patients. A fulsome evaluation is planned to assess the reach, use, and partnership indicators of the KM products and dissemination plan.

Ethnic representation within virtual reality: a co-design study in a forensic youth care setting

BackgroundVirtual reality (VR) is one of the most cutting-edge digital technologies currently used to extend and adapt mental health interventions. When designing therapeutic VR-applications, bias related to representational and behavioral features can be introduced. Specific bias, that could result from ethnic stereotyping, should be averted. However, structured debates and clear guidelines on how to deal with such bias are lacking.ObjectiveIn the current paper we describe our iterative, co-design process to develop an augmented version of a 360-degree VR-video that is used in the Street Temptations intervention. In this intervention, aimed at adolescents with disruptive behavior problems, the VR-video provides adolescents with an emotionally engaging situation and forms the basis of Street Temptations’ perspective-taking exercises. By presenting a detailed example of our VR developmental process, specifically focusing on ethnic representation in this virtual environment and related ethical aspects, we aim to positively contribute to the creation of ethically sound therapeutic VR-applications.MethodWe adopted an experience-based co-design approach. The process started by assembling professionals’ experiences with the original VR-video. Following, we conducted four co-design groups with adolescents, young adults, and professionals within the forensic youth care system, as experiential experts, to collaboratively develop an enhanced VR-scenario for the Street Temptations intervention. In total, ten adolescents, four young adults and four professionals participated. The co-design groups were alternated with sessions with a screenwriter, to reflect on the results of the co-design groups. In this way, we enabled continuous feedback on and design of the ameliorated scenario and let development and data collection reinforce each other.ResultsThe most important adjustments that were brought forward included explicit incorporation of diversity, establishing a clear storyline for the scenario, keeping the content close to reality, casting actors in a way to avoid obvious stigmatization, and using only names for the characters that are commonly used across different cultural and ethnic backgrounds.DiscussionBy presenting our developmental process, we give a detailed example of how to reflectively develop ethically sound therapeutic VR-content within a forensic youth care setting. We demonstrated that including stakeholders can help in preventing socially irresponsible and conceivably hurtful stereotypes. By describing the process in detail, we hope to contribute to the responsible use of technology within mental health care.

KNOWLEDGE PRODUCTS TO HELP EXERCISE PROFESSIONALS IMPLEMENT EXERCISE RECOMMENDATIONS FOR PEOPLE WITH BONE METASTASES: CO-DESIGN OF A HEALTH INFORMATION FORM

INTRODUCTION People with bone metastases have historically been advised to limit exercise due to risk of skeletal adverse events, such as bone fracture. Published recommendations by the International Bone Metastases Exercise Working Group (IBMEWG) emphasize regular exercise may benefit people with bone metastases; however, there are barriers to adopting these guidelines into clinical practice. For example, exercise professionals (EPs) report challenges obtaining necessary medical information about bone metastases to develop/design safe exercise programs. To address this, a Health Information Form (HIF) was developed using an experience-based co-design approach with three knowledge user (KU) groups: patient/family partners (PFPs), oncology healthcare providers (HCPs), and EPs. The aim of this study was to gather feedback from an international audience on the usability of the HIF. METHODS An online survey was advertised widely to KU groups using a social media toolkit and targeted email invitations to professional organizations. Questions included demographic information, usability of the HIF, and suggestions for dissemination. Analysis of survey responses was descriptive. RESULTS 69 respondents from North America (71%), Europe (20%), and Australasia (9%) provided feedback on the HIF. Most were EPs (54%) or PFPs (36%), and half (54%) had some awareness of the IBMEWG exercise recommendations. 81% of respondents found the purpose of the HIF easy to understand and 77% rated the content as excellent or very good. The design was rated as excellent or very good by 62% with feedback such as “… covers a lot of areas in a way that is brief and effective”. 14 respondents suggested information that could be added to the HIF (e.g., fracture risk factors, recent surgeries). CONCLUSION Overall, the HIF was well received by an international audience. The feedback provided by respondents will be utilized to enhance both the design and content of the form.

Experiences and learnings from developing and implementing a co-designed value-based healthcare framework within Victorian public oral health sector.

Objective This study aimed to describe the development and implementation of a co-designed value-based healthcare (VBHC) framework within the public dental sector in Victoria. Methods A mixed-method study was employed. Explorative qualitative design was used to examine patient, workforce and stakeholder perspectives of implementing VBHC. Participatory action research was used to bring together qualitative narrative-based research and service design methods. An experience-based co-design approach was used to enable staff and patients to co-design services. Quantitative data was sourced from Titanium (online patient management system). Results Building a case for VBHC implementation required intensive work. It included co-designing, collaborating, planning and designing services based on patient needs. Evidence reviews, value-stream mapping and development of patient reported outcomes (PROMs) and patient reported experience measures (PREMs) were fundamental to VBHC implementation. Following VBHC implementation, a 44% lower failure to attend rate and 60% increase in preventive interventions was reported. A higher proportion of clinicians worked across their top scope of practice within a multi-disciplinary team. Approximately 80% of services previously provided by dentists were shifted to oral health therapists and dental assistants, thereby releasing the capacity of dentists to undertake complex treatments. Patients completed baseline International Consortium for Health Outcomes Measurement PROMs (n = 44,408), which have been used for social/clinical triaging, determining urgency of care based on risk, segmentation and tracking health outcomes. Following their care, patients completed a PREMs questionnaire (n = 15,402). Patients agreed or strongly agreed that: the care they received met their needs (87%); they received clear answers to their questions (93%); they left their visit knowing what is next (91%); they felt taken care of during their visit (94%); and they felt involved in their treatment and care (94%). Conclusion The potential for health system transformation through implementation of VBHC is significant, however, its implementation needs to extend beyond organisational approaches and focus on sustaining the principles of VBHC across healthcare systems, policy and practice.

Exploring and Understanding the ‘Experience’ in Experience-Based Codesign: A State-of-The-Art Review

Enhancing user and provider experience are central tenets of value-based healthcare. Gaining access to personal and distinct experiential knowledge is the first stage of an experience-based codesign (EBCD) approach, underpinning the second stage of codesigned improvement: the codesign itself. This state-of-the-art review synthesised the evolving scope and nature of methods to gather experiential knowledge reported in the EBCD literature. Fifty-three of 64 (83%) scholarly EBCD articles reviewed were published since 2017. Methods are evolving to promote inclusivity of diverse user groups and move more rapidly to codesign. However, omitted steps in the methodology undermined fulfilment of core principles of the EBCD approach which may diminish its value as an accepted form of codesign. Experiential knowledge is crucial for designing user-centred health care. The challenge lies in making healthcare experience methods accessible. This review provides guidance on key steps in the first stage of the EBCD approach and modifications that may overcome barriers while upholding core principles and meeting the objectives of the inquiry.

The impact of breast surgeon information on women’s breast outcome: evidence from breast conserving therapy

Introduction: With the increase in life expectancy and the development of medical knowledge, the expectation that individuals will live a quality life till the very last days is becoming the norm. Palliative care is an approach that improves the quality of life of patients and their families facing the issues associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, comprehensive assessment and a management plan that considers, physical, psychosocial and spiritual needs. Despite this wholesome definition, the majority of palliative care interventions remain localized and siloed.
 Context: In 2019, the Ministry of Health in Ontario, Canada, announced the Ontario Health Teams (OHTs) as an innovative integrated care network model to deliver integrated person-centred care to Ontarians across their life trajectory (currently there are 54 teams covering 95% of the population). These teams utilize a population health management philosophy to integrate care in a person-centered manner. Integrating palliative care across care sectors and along the trajectory of the palliative care journey is a priority to many of these teams.
 Approach: In the Spring of 2022, Burlington OHT formed a working group to co-design an integrated palliative care model. This working group included patients, caregivers, palliative care physicians and nurses, primary care physicians and nurses, home and community care providers, hospice care providers, policy makers, researchers and evaluators. A participatory experience-based co-design approach was taken to identify the gaps, determine best practices, design a new care model, create an implementation plan, implement, evaluate and improve.
 The participatory experience-based co-design approach was guided by the 11-step methodology described by O'Cathain A, et al in 2019 when co-designing complex health interventions. We added some additional steps. The modified methodology included 1) planning the co-design process, 2) involving all stakeholders (including those who will implement, deliver, use and benefit from the intervention), 3) bring together a team and establish decision-making processes, 4) needs assessment via multiple engagement tools (surveys and virtual and in-person engagement sessions), 5) review published research evidence, 6) draw on existing theories/frameworks, 7) identify relevant change ideas, 8) articulate programme theory, 9) undertake primary data collection, 10) understand the local context, 11) pay attention to future implementation of the intervention in the real world, 12) design and refine the intervention and finally 13) implement and evaluate.
 The project is in its concluding stages and the final findings including the detailed integrated palliative care model description and the implementation plan will be available for the conference in May
 Implications for applicability/transferability: Designing integrated palliative care programs is a novice area of integrated care across the world. Describing the participatory experience-based co-design approach that we followed to plan our intervention has a great potential of guiding policymakers, planners, funders and implementers on how to plan and implement such interventions by facilitating a work together-plan together approach.

Working Together-Planning together. A participatory experience-based co-design approach to build an integrated palliative care model in Ontario, Canada.

Introduction: With the increase in life expectancy and the development of medical knowledge, the expectation that individuals will live a quality life till the very last days is becoming the norm. Palliative care is an approach that improves the quality of life of patients and their families facing the issues associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, comprehensive assessment and a management plan that considers, physical, psychosocial and spiritual needs. Despite this wholesome definition, the majority of palliative care interventions remain localized and siloed.
 Context: In 2019, the Ministry of Health in Ontario, Canada, announced the Ontario Health Teams (OHTs) as an innovative integrated care network model to deliver integrated person-centred care to Ontarians across their life trajectory (currently there are 54 teams covering 95% of the population). These teams utilize a population health management philosophy to integrate care in a person-centered manner. Integrating palliative care across care sectors and along the trajectory of the palliative care journey is a priority to many of these teams.
 Approach: In the Spring of 2022, Burlington OHT formed a working group to co-design an integrated palliative care model. This working group included patients, caregivers, palliative care physicians and nurses, primary care physicians and nurses, home and community care providers, hospice care providers, policy makers, researchers and evaluators. A participatory experience-based co-design approach was taken to identify the gaps, determine best practices, design a new care model, create an implementation plan, implement, evaluate and improve.
 The participatory experience-based co-design approach was guided by the 11-step methodology described by O'Cathain A, et al in 2019 when co-designing complex health interventions. We added some additional steps. The modified methodology included 1) planning the co-design process, 2) involving all stakeholders (including those who will implement, deliver, use and benefit from the intervention), 3) bring together a team and establish decision-making processes, 4) needs assessment via multiple engagement tools (surveys and virtual and in-person engagement sessions), 5) review published research evidence, 6) draw on existing theories/frameworks, 7) identify relevant change ideas, 8) articulate programme theory, 9) undertake primary data collection, 10) understand the local context, 11) pay attention to future implementation of the intervention in the real world, 12) design and refine the intervention and finally 13) implement and evaluate.
 The project is in its concluding stages and the final findings including the detailed integrated palliative care model description and the implementation plan will be available for the conference in May
 Implications for applicability/transferability: Designing integrated palliative care programs is a novice area of integrated care across the world. Describing the participatory experience-based co-design approach that we followed to plan our intervention has a great potential of guiding policymakers, planners, funders and implementers on how to plan and implement such interventions by facilitating a work together-plan together approach.

My Wellbeing Journal: Development of a communication and goal-setting tool to improve care for older adults with chronic conditions and multimorbidity.

Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person-centred approach that considers the individual's goals, preferences and priorities. However, ensuring high-quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. To codesign a communication and goal-setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. We drew on an experience-based codesign approach to develop My Wellbeing Journal. This article reports on the final end-user feedback, which was collected via an online survey with older adults and their carers. Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person-centred, goal-oriented care for older adults with chronic conditions and multimorbidity. Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability.

Using experience-based co-design to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation

AimTo investigate and describe the process of using experience-based co-design (EBCD) to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation.SettingTwo cross-sectoral stroke rehabilitation settings in Denmark comprising six rehabilitation units.ParticipantsStroke survivors (n = 23), significant others (n = 18), occupational therapists (n = 12), physiotherapists (n = 9), representative of a patient organization (n = 1), application developers (n = 3) and researchers (n = 2).MethodA structured, facilitated EBCD approach comprising six stages was used to co-design a service that aimed to address the priorities and needs of all relevant end-users. Data were collected by interviews, participant observations, notes on “flip sheets” and written feedback on the content in the apps and on the instruction pages. Data were analyzed descriptively and with a constructivist grounded theory analysis.ResultsThe content in the application solutions “Mit Sygehus” and “Genoptræn.dk” were co-designed to support the needs identified by all end-users. Relevant evidence-based knowledge, person-centred exercises and guidelines using video recordings were the most important among the developed content in the applications to support person-centred and empowering stroke rehabilitation. Furthermore, easy, and seamless communication were considered important.ConclusionsEBCD facilitated the development of content in the applications to support a person-centred and empowering stroke rehabilitation. Participants experienced that their contribution was considered important and valued.

Leveraging an Experience-Based Codesign Approach to Improve the Inpatient Food Service Experience.

Hospital food service is a key patient experience domain in an inpatient setting, which also plays an important role in responding to clinical and nutritional needs by providing food that is acceptable to patients. To achieve the strategic objective of a "distinguished patient experience," a Food Service Patient Experience Improvement Project was implemented at Al Hada Armed Forces Hospital during the second quarter of 2021 (Q2-2021) to improve the patient experience of meals at inpatient units. A quasi-experimental study design was used to assess the improvements in the inpatient meal experience by implementing an experience-based codesign approach. Improvements in the inpatient setting patient experience survey (Press Ganey) meals domain were measured. SQUIRE 2.0 guidelines were used to report this quality improvement project. A significant improvement was observed in the inpatient meals patient experience mean score before (Q1-2021, 68.75) versus after (Q3-2021, 81.93) the implementation of the Food Service Patient Experience Improvement Project. Food services are an important element in the patient recovery process and experience. The experience-based codesign is an effective coproduction approach to improve the patient experience and promote patient-centered care.

Experience-based codesign approach to improve care in Australian emergency departments for complex consumer cohorts: the MyED project protocol, Stages 1.1–1.3

IntroductionEmergency department (ED) care must adapt to meet current and future demands. In Australia, ED quality measures (eg, prolonged length of stay, re-presentations or patient experience) are worse for older...

Improving heart failure care with an Experience-Based Co-Design approach: what matters to persons with heart failure and their family members?

BackgroundHeart failure is a chronic heart condition. Persons with heart failure often have limited physical capability, cognitive impairments, and low health literacy. These challenges can be barriers to healthcare service co-design with family members and professionals. Experience-Based Co-Design is a participatory healthcare quality improvement approach drawing on patients’, family members’ and professionals’ experiences to improve healthcare. The overall aim of this study was to use Experience-Based Co-Design to identify experiences of heart failure and its care in a Swedish cardiac care setting, and to understand how these experiences can translate into heart failure care improvements for persons with heart failure and their families.MethodsA convenience sample of 17 persons with heart failure and four family members participated in this single case study as a part of an improvement initiative within cardiac care. In line with Experienced-Based Co-Design methodology, field notes from observations of healthcare consultations, individual interviews and meeting minutes from stakeholders’ feedback events, were used to gather participants’ experiences of heart failure and its care. Reflexive thematic analysis was used to develop themes from data.ResultsTwelve service touchpoints, organized within five overarching themes emerged. The themes told a story about persons with heart failure and family members struggling in everyday life due to a poor quality of life, lack of support networks, and difficulties understanding and applying information about heart failure and its care. To be recognized by professionals was reported to be a key to good quality care. Opportunities to be involved in healthcare varied, Further, participants’ experiences translated into proposed changes to heart failure care such as improved information about heart failure, continuity of care, improved relations, and communication, and being invited to be involved in healthcare.ConclusionsOur study findings offer knowledge about experiences of life with heart failure and its care, translated into heart failure service touchpoints. Further research is warranted to explore how these touchpoints can be addressed to improve life and care for persons with heart failure and other chronic conditions.

Capturing, the experiences of undergraduate student nurses undertaking a pre-registration nursing degree course using an adapted experience based co-design approach

BackgroundThe quality of student experience in higher education plays an increasingly important role in attracting and retaining pre-registration nurses. Identifying and understanding the students' experiences of their course is a necessary step in the move towards improving the student experience. Experience Based Co-design (EBCD) is successfully established as an effective process for improving patient experience in a health care setting. This study presents the use of EBCD outside of healthcare, specifically in a higher education setting. ObjectivesTo capture, explore and understand the experiences of students' undertaking a pre-registration (adult) nursing course, and co-design potential improvements for future experiences through the application of an EBCD approach. MethodsAn adapted EBCD approach was utilised for gaining insight into what shapes students' experience of the nursing course and to collaboratively produce priority recommendations for course improvement. Semi-structured interviews, emotional touchpoint mapping and co-design events were conducted with undergraduate nursing students (n = 22) and staff stakeholders in a pre-registration (adult) nursing course (n = 19). Findings were analysed using the ‘Six phases of thematic analysis’ (Braun & Clarke, 2006). ResultsStudents had varied experiences on the nursing course, both positive and negative, particularly with student support. Three priority recommendations for course improvement were identified from the findings including: facilitating and supporting student development of independent study skills, enhancing student support in the clinical practice placement environment and clarifying and enhancing the role of the academic advisor. ConclusionsFindings from this study highlight areas for improvement on a pre-registration nursing course that could impact future students' experience. Furthermore, this study appears to be the first documented as using EBCD in a higher education setting with the focus on students, that enabled students and staff stakeholders in the nursing course to co-design priority recommendations for course improvement.

Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach

IntroductionPeople with lived expertise in managing mental health challenges can be an important source of knowledge and support for other people facing similar challenges, and for carers to learn how...

Public and Patient involvement and engagement in research design. Co-create a toolkit that enables quality time together across the Dementia journey.

Public and Patient involvement and engagement in research design: Co-create a toolkit that enables quality time together for Dementia. There is a growing consensus in the U.K. that public and patient involvement and engagement (PPIE) - e.g. people living with dementia (PLWD), their families, carers, professionals and community - in dementia research is instrumental in improving the quality of research projects and strengthening its relevance and impact. However, publications on PPIE during dementia design research is lacking knowledge and learning exchange within research communities. This project fills in this knowledge gap by involving and engaging 12 family caregivers, care workers and professionals who care for PLWD aged 65 and above at any stage (mild, moderate, and severe) as well as relevant stakeholders. The participants contributed in the research design to co-create an easy access, supportive toolkit that could be used by both PLWD as well as their in/formal carers to promote person centredness care in dementia. This was achieved through participatory approaches with dementia carer focus group workshops and a stakeholder engagement workshop to: (a) generate the ideas and research questions by spending meaningful/quality time together face-to-face and digitally across the dementia journey, (b) using an experience-based co-design approach to design the research methodology for co-creation workshops, (c) co-produce a research funding proposal which has strong PPIE in all stages. d) feedback on the experience with the design research. We argued a participatory approach to PPIE during design research can be time consuming and costly though critical. Firstly, the primary strength of participatory approach was the target population trying our initial research design, then design the research collaboratively. Secondly, it developed a sense of ownership and ongoing commitment among the PPIE groups. Thirdly, it helped us to ensure culturally and logistically appropriate design research. Fourthly, it helped participants to be more meaningfully engaged in research, which in turn concluded with a co-created research design that could have greater potential to produce relevant, meaningful research findings translated to care practice and policy.

Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study.

BackgroundEach year in England, almost 10,000 parents are informed of their child’s positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress.ObjectiveThis study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents.MethodsAn experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform.ResultsParents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals’ communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents’ views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results.ConclusionsParents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children.International Registered Report Identifier (IRRID)RR2-10.1186/s40814-019-0487-5

Experience-based co-design (EBCD) with young people who offend: Innovating methodology to reach marginalised groups.

The mental health needs of young people who offend have become more widely recognised and attempting to meet these needs is now a global priority for governments and health agencies. Young people who offend experience a range of complex difficulties and have significantly worse health and social outcomes than their mainstream counterparts. These problems usually persist and often increase in severity through adolescence and into later life. There is growing acceptance of the potential value of co-designing services that recognise and address problems to improve the outcomes of young people with mental health problems yet to date, this methodological approach remains relatively unexplored in forensic service provision. Experience-based co-design (EBCD) is an approach to healthcare improvement that enables staff and service users to jointly co-design services. Central to the approach is the idea that understanding the experiences of service users and the ‘touchpoints’ (e.g., critical points or moments) in their journey through a service are integral to service improvement. The aim of this study was to explore whether EBCD could be applied to facilitate recognition of, and service developments for, young people presenting in community forensic settings. Qualitative methods used in this study included: observational fieldwork in four police custody suites (n = 30 hours), in-depth interviews with staff in community forensic services (n = 13) and researcher staff (n = 7). In this paper, the challenges of applying EBCD in community forensic settings with this population were: working with and across agencies; gaining access to participants; understanding knowledge and power dimensions amongst participants and understanding the context. This paper argues that innovative approaches to discovering the touchpoints for young people who offend – a key component of the EBCD approach - through combining analyses of secondary data and direct observations in community forensic settings can facilitate engagement with these specialist services and so provide access to relevant information about a group (i.e., young people who offend) who may be unable to participate directly in the EBCD process.

The Feasibility and Acceptability of an Experience-Based Co-Design Approach to Reducing Domestic Abuse

One means of reducing violence against people experiencing domestic abuse is to improve the pathway which they use to access help from the police and other services. In this paper we report and reflect on a project which contributes to violence reduction via a participatory approach to service improvement, focusing on this pathway. We describe the four phases of an innovative experience-based co-design (EBCD) project, which involved collaborating with domestic abuse survivors as well as members of the police and domestic abuse organizations. We report on indicators of the acceptability and feasibility of EBCD in this context. We also reflect upon the potential of the EBCD approach for involving communities in collaborating with services to reduce domestic abuse. We discuss the conceptual and methodological implications with regard to adopting participatory and inclusive approaches in contexts where power-sharing may be difficult. We argue that EBCD has considerable potential for use in this setting and we identify several areas where insights from this project could be used to improve the future viability of any such initiatives.