Experience-based Co-design Research Articles

Co-designing Services for Youth With Mental Health Issues: Novel Elicitation Approaches

Experience-based co-design (EBCD) is an innovative, evidence-based approach to health and social system change based on principles of participatory action research, narrative and learning theory, and design thinking. Unique elicitation strategies such as experience mapping, trigger videos, and prototype development are used in EBCD to engage service users and service providers in a collaborative process of identifying touchpoints and solutions to system-level problems. In this article, we present findings from interviewing a purposeful sample of 18 participants (4 youth, 6 service providers, 6 family members, and 2 employers) across three co-design projects designed to address either mental health or employment services for youth (aged 16–24) with mental health issues in one urban center. Through interviewing participants, perceptions were explored relating to three elicitation techniques: creating experience maps, creating and viewing trigger videos, and co-designing visual “prototype” solutions. Analysis of participants’ comments indicated that these techniques can be powerful tools to foster mutual understanding and collaborative ideas, but they require a social, spatial, and temporal context that optimizes their value. A “safe space” is needed within which the essential elements of elicitation—building trust, finding voice, sharing perspectives, and creating a common vision—can occur. Three core, overlapping processes of co-design elicitation were identified: “building common perspectives,” “building mutual understanding,” and “building innovation.” We present a conceptual framework depicting the interplay of processes and elicitation techniques, essential to building mutual understanding and innovation during the EBCD process.

Experience based co-design in acute healthcare services: a scoping review protocol.

The objective of this scoping review is to examine, map and analyze qualitative and quantitative literature on experience-based co-design (EBCD) within acute care health settings. Specifically, the review questions are.

Improving CARE Together – Building Partnerships with Family Caregivers

Background: An estimated 8 million people in Canada are family caregivers and save the health care system over $31 billion annually 1. Yet, family caregivers are often referred to as “the silent partners” in care. Recognizing the importance of the family caregiving role and engaging families in decision-making and healthcare planning is an important aspect to improving care. St. Joseph’s Health Care London, a multi-site health care organization in Ontario, Canada aims to ensure patients and families are full partners in their care and in the design, measurement and improvement of care. Guided by St. Joseph’s Care Partnership Framework 2017, this project aims to improve family caregiver experiences and engagement through partnering with patients, families and health care providers in decision-making and health care planning. Methods: This project follows best practices for experience-based co-design 2 which includes three major steps. Step 1: a discovery phase to learn about current health care experiences. Focus groups and individual interviews were conducted with patients n=15, family caregivers n=73 and health care providers n=141. Ethnographic observations were also completed. Data were analyzed using line by line emergent coding techniques 3. Step 2: Experiences, represented in broad themes, were shared in co-design workshops involving health care providers, patients and family caregivers. Together, priorities were identified. Step 3: Working groups developed resources and strategies that were implemented to improve family experiences and engagement in decision-making. Qualitative e.g. interviews and quantitative measures e.g. experience measure were used to evaluate the work. Results: Several themes emerged from the discovery phase, including: the issue of time, caregiver involvement in care planning, the need for better communication, and better involvement in care transitions. These themes were discussed at a co-design event with patients and families. Resources were co-created including: a resources for better patient, family caregiver and provider communication following best practices for engagement; b tools to recognize and assess family caregivers; and c educational materials to provide community and self-management information to patients and families. Family caregiver and provider outcomes were positive following implementation. Discussion & Conclusions: New resources and care processes were implemented to improve family caregiver engagement and experiences. Patients and family caregivers were involved in all stages of this work, including patient and family caregiver representatives who worked directly with the project team and patient and family caregiver advisors who guided this work through a steering committee. Lessons Learned: Important insights about patient and family engagement emerged including: taking time to build a trusting relationship; involving families in every aspect of co-design and care planning; and engaging health care providers and leaders in education around the importance of family engagement. Limitations: This work is limited to two areas of the health care organization, geriatrics and rehabilitation. Learnings will be applied to other areas of the organization over the next two years. Future Research: Future work should focus on patient and health system outcomes as a result of improved family caregiver experiences. 1. The Change Foundation, 2016 2. Point of Care, 2016 3. Lofland et al., 2006

Processes in an Experience-Based Co-Design Project With Family Carers in Community Mental Health

Experience-based co-design (EBCD) is a service design strategy that facilitates collaborative work between professional staff and service users toward common goals. There is a lack of published examples of it in relation to family carer engagement within a mental health context, and little research exploring the mechanisms behind successful implementation. The aim of this study was to explore the processes that facilitated EBCD with carer involvement. The study adopted a grounded theory–informed approach involving interviews with 16 participants of an existing EBCD project in an English National Health Service (NHS) trust, reflecting multiple stakeholders. EBCD can be thrown off track in two ways: conflict and getting “bogged down.” Leadership by project and design-group leaders could return group cohesion and maintain project momentum. The developed model reflects key processes. Future research should examine EBCD projects with similar ranges of stakeholders and in contexts with different levels of organizational change.

Data Elicited Through Apps for Health Systems Improvement

A promising approach to meeting the need in many jurisdictions for timely, in-depth qualitative health systems experience data, is to elicit feedback through smartphone and web applications (apps). Apps offer an appealing tool to elicit data from patients and family members who may feel stigma when receiving some services and a power imbalance when providing feedback to health-care providers. In this article, we examine the effectiveness of a suite of smartphone and web apps called myExperience ( myEXP) that were created to gather care experiences of youth, family members, and service providers as part of an experience-based co-design (EBCD) study in Ontario involving youth with mental disorders. We analyzed data from 12 triads of youth (aged 16–24), family members, and service providers gathered between August 2015 and December 2016. We used qualitative content analysis to understand participant feedback on the myEXP apps and identify thematic categories that emerged from experience data elicited through the myEXP apps. We found overall that the myEXP apps were more effective at eliciting experience data from youth compared with family members and service providers. Rich experience data were gathered from youth about treatment plans in real time through the apps. The apps also showed important promise as reflective tools for all participants. They may offer advantages in research that seeks to improve responsiveness in service delivery and build mutual understanding. The apps also offer choice in how data are elicited, encourage more candid feedback and help to overcome stigma, which are important considerations for some vulnerable populations. For service redesign research using approaches such as EBCD, apps offer real-time data gathering that can complement and enhance traditional approaches such as retrospective interviews and observation.

Experience-Based Co-Design of Diabetes Shared Medical Appointments: Using Ethnography and Other Qualitative Methods to Enhance the Patient and Staff Experience

Experience-Based Co-Design of Diabetes Shared Medical Appointments: Using Ethnography and Other Qualitative Methods to Enhance the Patient and Staff Experience

Development, acceptability and feasibility of a communication skills training package for therapeutic radiographers to reduce fear of recurrence development in breast cancer patients (FORECAST2)

BackgroundMany patients who have been treated for breast cancer experience high levels of fear that the cancer will return. The FORECAST pilot study showed that for a third of the patients, fears of cancer recurrence (FCR) increase during radiotherapy treatment and that conversations with their therapeutic radiographer at the weekly review meetings might help patients manage these concerns. This study aims to develop a communication skills training package (KEW, for ‘Know’, ‘Encourage’ and ‘Warm-up’) for therapeutic radiographers based on the findings of the FORECAST pilot study and on active input from patients and radiographers. This package will be piloted in a single centre to evaluate its acceptability and to prepare for a multi-centre clinical trial.MethodsThe study consists of three phases. In the first phase, patient representatives and therapeutic radiographers participate in Experience-Based Co-Design to identify ways to improve communication during the radiotherapy review. In the second phase, various stakeholders, including members of the Society of Radiographers and of national patient representation groups, are consulted to develop a storyboard for the production of the communication training package. In the third phase, the acceptability and feasibility of the training is evaluated through observations, recruitment rates and follow-up discussions; a fidelity measure is designed; and potential benefits are observed, with patients’ fear of cancer recurrence (FCR7) as the primary outcome. Secondary outcomes include a short daily measure of recurrence (FCR3), patients’ positive and negative affect (PANAS), perceived empathy from the radiographer (CARE), satisfaction with the review meetings (RISS) and health-related quality of life (EQ-5D-3L).DiscussionTo date, there has been limited research on how communication between therapeutic radiographers and patients during review appointments can help to manage patients’ recurrence fears during radiotherapy treatment. A collaborative and participatory approach to the development of a communication skills training will ensure that it is optimally targeted to the needs and preferences of both patients and radiographers. Targeting recurrence fears through communication at this stage, when patients are still in regular contact with healthcare providers, has the potential to reduce the need for complex interventions post-treatment.Trial registrationNRES reference: 18/LO/0669. Clinicaltrial.gov ID: NCT03468881

Patient and Staff Engagement in Health System Improvement: A Qualitative Evaluation of the Experience-Based Co-design Approach in Canada.

Surveys and interviews were undertaken in Ontario, Canada, with healthcare staff, patients, caregivers and family members to evaluate the adoption and effectiveness of the experience-based co-design (EBCD) approach. EBCD combines patient and staff experiences to identify opportunities for healthcare improvement. Participants reported that EBCD was an effective form of improving experience. Implementation barriers included time, human resources and funding. Suggestions for increased EBCD utilization included funding, training, promotion of success stories, leadership and greater participant involvement. EBCD can be an effective method of identifying and transforming how healthcare services are delivered to improve the patient, caregiver and family experience.

Welcoming Feedback: Using Family Experience to Design a Pediatric Weight Management Program.

Objective:To describe an approach using principles of experience-based codesign (EBCD) and quality improvement (QI) to integrate family experience into the development of a pediatric weight management program.Methods:Clinic development occurred in 3 plan, do, study, act (PDSA) cycles that were driven by family experience data. During these cycles, families were engaged in feedback sessions that informed program development. Staff reflected on feedback and designed and tested changes that would improve service delivery.Results:The first PDSA cycle resulted in the fundamental program parameters and a formalized patient engagement strategy. The second cycle focused on pilot programming, and feedback was used to develop the structured group program. During the third cycle, feedback sessions were embedded into the structured group programs. Program changes included focusing on health rather than weight-based outcomes, adjusting the timing of program offerings, increasing experiential learning opportunities, and providing more opportunities for peer support.Conclusions:Both EBCD and QI methodologies informed the process of family engagement and program development. This pragmatic approach might be useful for the development of other family-centered pediatric programs.

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology.

Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration. The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices. The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.

Why experience-based co-design improves the patient experience

Given patients' first-hand knowledge of healthcare services, their ideas for change are essential to designing a successful patient experience. This editorial discusses experience-based co-design, a systematic, evidence-based approach that has been used successfully in many different healthcare settings in many countries.

Experience-Based Co-Design: Tackling common challenges

There has been a surge in experience-based co-design (EBCD) efforts for quality improvement in health care and systems design globally. Service users together with staff are playing a far greater role than ever before in the redesign of services and systems of care. EBCD offers a systematic, bottom-up approach to improving service user and staff experiences of care. There is growing interest in the application and potential of EBCD; however, studies indicate common shared challenges, which coalesce around power, commitment to the process, methods for gathering experiences, designing improvements, implementation, and subsequent impact.

‘Out There’: Developing a transition pathway for adolescents and young adults with cancer using Experience-Based Co-Design

Experience-based co-design (EBCD) was used in the adolescent and young adult (AYA) oncology setting to develop a transition pathway from hospital for young adults completing cancer treatment. The EBCD methodology provides the opportunity to embed patient experience and input into service design. In this project staff and AYAs identified unmet needs and suggested working packages around psychological support, and provision of information about fertility, work, education, and relationships. Staff identified deficits in knowledge of survivorship issues for AYAs and interest in preparing AYAs for life after treatment.

Using patient experiences to develop services for chronic pain.

The aim of this study was to improve the overall experience for patients using chronic pain services at a large teaching hospital in England. Experience-based co-design methodology was used to gain a greater understanding of patients' experiences and to produce a list of priorities for change when improving the patient experience. A total of seven video-recorded patient interviews were conducted to capture a range of patient experiences of using the chronic pain service. The interviews were analysed to identify 'touchpoints' which are areas in which patients experienced a heightened emotional response to their interaction with the service or staff. A short trigger film was compiled to illustrate these touchpoints to staff and gain their commitment to improve patients' experiences when using the service. A patient experience event was held at which patients discussed the touchpoints and identified the most significant areas for change that would improve their experiences of using the chronic pain service. A wide range of touchpoints were identified. The lack of information provided before arriving for a procedure and the need for a short debrief after clinic were prioritised for improvement. Patients valued the development of good relationships with clinic staff and feeling properly listened to for the first time. The patient experience event allowed the key points patients would like to know before a procedure, to be drawn up in a list, which could be passed onto staff. This study featured collaboration between patients and staff to improve patients' experiences of using chronic pain services. Through patient participation, a comprehensive list of recommendations for service improvement was produced, and possible solutions were identified. The involvement of patients in driving change and re-designing services is shaping a more patient-centred chronic pain clinic and improving the experience for all the patients who use the service.

Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity.

BackgroundMultimorbidity, defined as the presence of two or more long‐term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care.DesignWe drew on two established methods—accelerated experience‐based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health‐care professionals to propose interventions to improve care.ResultsBoth patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes.Discussion & ConclusionsThe process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices.

Power dynamics and collaborative mechanisms in co-production and co-design processes

Co-production and co-design practices are increasingly being promoted to develop user-centred public services. Analysing these practices with literature on power, participation and realist social theory this article explores the power dynamics, mechanisms and impacts within co-production and co-design processes. Two case studies were evaluated using qualitative longitudinal methods: an experience-based co-design project within hospital-based breast cancer services was followed from initiation to completion, alongside a local government innovation team that used co-production and co-design techniques to enable person-centred policies and services. The two cases illustrate how co-production and co-design techniques involve facilitating, managing and co-ordinating a complex set of psychological, social, cultural and institutional interactions. Whilst existing power relations can be challenged in different ways, constant critical reflective practice and dialogue is essential to facilitate more equal relational processes within these techniques, and to institute changes at individual, local community and organisational levels.

The impact of patient advisors on healthcare outcomes: a systematic review

BackgroundPatient advisory councils are a way for healthcare organizations to promote patient engagement. Despite mandates to implement patient advisory councils through programs like the Patient-Centered Medical Home (PCMH), there is a paucity of data measuring the impact of patients functioning in advisory roles. Our objective is to investigate whether patient engagement in patient advisory councils is linked to improvements in clinical quality, patient safety or patient satisfaction.MethodsWe searched PubMed, SCOPUS, CINAHL and Google Scholar for English language publications between November 2002 to August 2015, using a combination of “patient advisor” and “care outcomes” search terms. Article selection utilized dual screening facilitated by DistillerSR software, with group discussion to resolve discordance. Observational studies, randomized controlled trials, and case studies were included that described patients serving in an advisory role where primary outcomes were mentioned. Reference lists of included studies and grey literature searches were conducted. Qualitative thematic analysis was performed to synthesize results.ResultsDatabase searching yielded 639 articles total after removing duplicates, with 129 articles meeting full text inclusion criteria. 32 articles were identified for final review, 16 of which were case studies. Advisory roles included patient advisory councils, ad-hoc patient committees, community advisory councils, experience-based co-design, and other. Four practice-based studies from one research group, involving community advisors in the design of public health interventions, found improved clinical outcomes. No prospective experimental studies assessed the impact of patient advisors on patient safety or patient satisfaction. One cluster-randomized RCT showed that patient advisors helped health care planning efforts identify priorities more aligned with the PCMH. Ten case studies reported anecdotal benefit to individual patient advisors.ConclusionFive included studies demonstrate promising methods for evaluating patient engagement in healthcare delivery and describe impacts on clinical outcomes and priority setting. Based on the case studies found, patient advisors tend to contribute to patient-facing services that may affect clinical care but are not easily evaluated. As clinics and hospitals implement patient advisory councils, rigorous evaluation of their programs is needed to support the expansion of system-level patient engagement.Trial registrationThis systematic review was registered in the PROSPERO database of the University of York Centre for Reviews and Dissemination (ID: 2015:CRD42015030020).

Showing the Unsayable: Participatory Visual Approaches and the Constitution of \u2018Patient Experience\u2019 in Healthcare Quality Improvement

This article considers the strengths and potential contributions of participatory visual methods for healthcare quality improvement research. It argues that such approaches may enable us to expand our understanding of ‘patient experience’ and of its potential for generating new knowledge for health systems. In particular, they may open up dimensions of people’s engagement with services and treatments which exceed both the declarative nature of responses to questionnaires and the narrative sequencing of self reports gathered through qualitative interviewing. I will suggest that working with such methods may necessitate a more reflexive approach to the constitution of evidence in quality improvement work. To this end, the article will first consider the emerging rationale for the use of visual participatory methods in improvement before outlining the implications of two related approaches—photo-elicitation and PhotoVoice—for the constitution of ‘experience’. It will then move to a participatory model for healthcare improvement work, Experience Based Co-Design (EBCD). It will argue that EBCD exemplifies both the strengths and the limitations of adequating visual participatory approaches to quality improvement ends. The article will conclude with a critical reflection on a small photographic study, in which the author participated, and which sought to harness service user perspectives for the design of psychiatric facilities, as a way of considering the potential contribution of visual participatory methods for quality improvement.

Patient involvement 2.0: Experience-based co-design supported by action research

Strong professionals who influence the development of healthcare services have dominated healthcare organizations for many years. However, this dominance has been challenged recently through patient involvement. One method of achieving patient involvement is experience-based co-design (EBCD), in which patients and healthcare professionals work together to improve care. Patient involvement has considerable potential, but also presents certain challenges. This article addresses these challenges using experiences from patients and healthcare professionals who participated in two action research projects that aimed to improve patient experienced quality using EBCD in pediatric care. The paper shows that patient involvement in quality improvements can challenge the traditional roles of professionals and patients by new roles as co-designers. The role as co-designer embraces new perspectives for healthcare professionals that force them to step out of their comfort zone. Accordingly, healthcare professionals are able to view patients as equal partners in improvement work. Reflecting dialogues during the projects offered eye-opening stories for patients and healthcare professionals that enabled them to construct a common picture of care. The contribution of this study is strengthening earlier research that argues that an action research approach can strengthen important values for successful EBCD projects: equal partnerships, new roles, and dialogue. The findings show that the combination of EBCD and action research is a promising approach to address the challenges of patient involvement in healthcare improvement.

Experience-based co-design: A method for patient and family engagement in system-level quality improvement

Integrating patient and family member needs, wants and preferences in healthcare is of utmost importance. However, a standardized patient and family engagement model to understand these needs, wants and preferences in order to translate into high quality improvement activities is lacking. Experience based co-design (EBCD) is an approach that enables patients, family members and healthcare providers to co-design improvement initiatives together. In this study, EBCD was employed to: 1) assess the current state of information and educational resources at a local oncology center and 2) partner with patients, family members, and healthcare providers to create quality improvement initiatives targeting identified issues. Three focus groups were conducted: 1) patient and family member-specific, 2) healthcare provider-specific, and 3) all participants (including patients, family members and healthcare providers). Discussion questions were focused around current educational resources, barriers encountered throughout the cancer continuum, and recommendations for improvement. Six themes emerged from the two initial focus groups with patients and family members and healthcare providers: 1) patient-provider communication, 2) accessing information, 3) tailored information, 4) side effect information, 5) caregiver information, and 6) partners in care. Themes were presented to participants to ensure findings accurately depicted their experience and five quality improvement projects were created, aligning with the themes. This study provides an example of how EBCD helped to foster a safe environment, where patients, family members, and healthcare providers worked together in order to improve educational resources.