Co-production has the capacity to encourage meaningful engagement and create public value. Co-production can occur at various stages or throughout the entire participatory process and there is increasing application of this approach in digital settings. The use of digital tools further complicates an already complex co-production process. Applying the Engagement, Alignment, and Agreement (EAA) framework (Masterson et al., 2024) this case study explores the experiences and shared learnings gained from participating in a co-production process in physical and digital environments as well as synchronous and asynchonrous interaction (blended co-production). The case study called “Heart of the Matter” involved citizens coming together to use the EAA-framework to explore co-production. We problematized how to create a conducive environment for co-production in a digital context maintaining its values and principles, whether in real-time, synchronized dialogues, or in delayed, asynchronous dialogues throughout the blended process.

The aim is to examine the challenges and opportunities participants encountered when using digital tools for social interaction and collaborative learning in a blended co-production setting.  The analysis is ongoing, and we will present preliminary findings from this case study exploring experiences and shared learnings from undertaking co-production in a blended setting. 

This presentation seeks to advance the conversation on digital co-production by adding the perspectives of participants and provide actionable insights for those who are planning to engage in co-production involving digital tools. 

Masterson, D., Lindenfalk, B., Kjellström, S., Robert, G., & Ockander, M. (2024). Mechanisms for co-designing and co-producing health and social care: a realist synthesis. Research Involvement and Engagement, 10(1). https://doi.org/10.1186/s40900-024-00638-3 

Background: The promotion of the best possible health and care is challenging to healthcare organizations worldwide. Healthcare organizations’ capability to improve the quality of care is therefore crucial to the sustainability of the welfare state. Research implies that co-production of healthcare, involving persons with disease, their families and healthcare professionals, has the potential to promote healthcare quality improvement and the best possible health and care. However, the evidence base for co-production in social and healthcare contexts is rather weak. Thus, the overall aim of this thesis was to explore the prerequisites for and the value of co-production and to provide lessons for future co-produced healthcare quality improvement initiatives in cardiac care.

Methods: All studies were conducted in a cardiac care setting in the southern part of Sweden between the years 2016 and 2023. The research had a qualitative design with a practice-oriented interactive research approach, underpinned by healthcare improvement science and pragmatism. Persons with atrial fibrillation or heart failure, their family members, and healthcare professionals participated in the research. Two models for co-production were explored – the Learning Café (LC) and Experience-Based Co-Design (EBCD). Data collection included patients’ ratings regarding their sense of security in everyday life, focus group interviews, project documentation, individual interviews, field notes from observations, and meeting minutes from stakeholders’ individual and joint EBCD feedback events. Data analysis entailed inductive or deductive qualitative content analysis and reflexive thematic analysis. Self-determination theory, the COM-B model and the MUSIQ framework were applied during the research process to promote an in-depth understanding of the concept of co-production.

Findings: This research exemplifies a learning journey toward co-production in a Swedish cardiac care setting. Barriers to and facilitators of co-production were identified on different levels – the individual, the relational and the systemic levels. Individual barriers to co-production included poor health and limited health literacy among persons with heart disease. Relational barriers included professionals not inviting patients and their family members to be involved in healthcare co-4 production. Barriers on the systemic level included time and resource constraints and varying understanding of how co-production might be applied in practice. Both self-centered motivations, such as wanting to learn more about a specific disease, and community-centered motivations, such a wanting to improve healthcare services, were identified to be facilitators to co-production. The LC and the EBCD process created value for its participants and the organization, including improved disease knowledge; relatedness; strengthened coping strategies and improved self-efficacy; awareness about the patient and family member perspective; and knowledge about what needs to change in heart failure care.

Conclusions: This thesis proposes how healthcare co-production might be practiced, particularly in cardiac care contexts which have seen only limited implementation of such initiatives. Self-centered motivations to co-produce were common among persons with heart disease and their family members, whereas community-centered motivations dominated among professionals. Future co-production initiatives should draw on these motivations. Furthermore, future co-production initiative should seek to overcome barriers to co-production by letting stakeholders participate on their own terms, by promoting a cultural change toward shared power between patients, family members and professionals and by encouraging healthcare leaders and mangers to support healthcare quality improvement. Furthermore, this thesis proposes that co-production brings value to its stakeholders in terms of improved coping strategies persons with heart disease and family members and enhanced work satisfaction among professionals. Future research is warranted to understand how co-production might be implemented and play out in various healthcare contexts and with other groups of persons living with chronic disease.

Bakgrund: Att kunna erbjuda bästa möjliga vård är en utmaning för hälso- och sjukvårdsorganisationer världen över. Organisationernas förmåga att förbättra vårdens kvalitet är därför avgörande för framtiden. Forskning tyder på att samskapande av hälso- och sjukvård (engelskans co-production of healthcare), som involverar personer med sjukdom, deras familjer och vårdpersonal, främjar bästa möjliga hälsa och vård. Det övergripande syftet med denna avhandling var att utforska förutsättningar för och värdet av samskapande och att identifiera främjande lärdomar för framtida samskapade kvalitetsförbätt-ringsinitiativ inom sjukvården.

Metod: Samtliga studier genomfördes inom hjärtsjukvården i södra Sverige mellan åren 2016-2023. Studierna hade en kvalitativ design med en interaktiv forskningsansats. Personer med förmaksflimmer eller hjärtsvikt, deras familjer och sjukvårdspersonal deltog i forskningsstudierna. Två modeller för samskapande utforskades – lärcafé och erfarenhetsbaserad verksamhetsutveckling (engelskans Experience-Based Co-Design, EBCD). Datainsamlingen inkluderade patientskattningar avseende trygghetskänsla, fokusgruppsintervjuer, projektdokumentation, individuella intervjuer, fältanteckningar från observationer och mötesprotokoll från individuella och gemensamma EBCD-sammankomster. Data analyserades med induktiv eller deduktiv kvalitativ innehållsanalys och reflexiv tematisk analys.

Resultat: Hindrande och underlättande faktorer för samskapande identifierades på olika nivåer – den individuella, den relationella och den systemiska nivån. Individuella hinder för samskapande bestod av nedsatt hälsa och begränsad hälsoliteracitet hos personer med hjärtsjukdom. Relationella hinder bestod av att inte bli inbjuden att samskapa. Hinder på systemnivån bestod av brist på tid och resurser samt varierande förståelse för hur samskapande kan tillämpas i praktiken. Deltagarnas motivation för att deltaga i projekten främjade samskapande och varierade från att deltaga för sin egen skull till att deltaga för att förbättra vården för andra med liknande utmaningar till6 följd av kronisk sjukdom. Lärcaféet och EBCD-processen skapade ett värde för deltagarna och organisationen, framför allt förbättrad sjukdomskunskap, stöd från andra med liknande erfarenheter, stärkta strategier för att hantera sjukdom och självförmåga, ökad medvetenhet om patient- och närståendeperspektiv samt kunskap om vad som behöver förändras inom hjärtsviktsvården.

Slutsatser: Avhandlingen visar hur samskapande kan tillämpas inom hjärtsjukvård. Personer med hjärtsjukdom och deras familjer deltog i projekten främst för sin egen skull medan medarbetare huvudsakligen deltog för att förbättra vården för andra som lever med kronisk sjukdom. Framtida samskapandeprojekt behöver utgå från dessa motiverande faktorer. Framtida projekt bör dessutom sträva efter att övervinna de faktorer som hindrar samskapande genom att låta deltagare deltaga på sina egna villkor, genom att främja en kulturförändring inom hälso- och sjukvården mot delad makt mellan patienter, närstående och medarbetare och genom att uppmuntra chefer till att stötta vården förändringsarbete. Vidare ger denna avhandling en ökad förståelse för det värde som samskapandet genererar i form av förbättrad sjukdomsbemästring bland personer med hjärtsjukdom och deras familjer samt förbättrad arbetstillfredsställelse bland medar-betare. Framtida forskning behövs för att förstå hur samskapande av hälso- och sjukvård kan överföras till andra vårdmiljöer för och med andra grupper av personer som lever med kroniska sjukdom.

BACKGROUND: Heart 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.

METHODS: A 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.

RESULTS: Twelve 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.

CONCLUSIONS: Our 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.

How can persons living with heart disease and their family members co-produce healthcare services in a cardiac care setting? What are are the facilitators of and barriers to such co-production? What are the learnings so far? These questions are discussed during the presentation using real-life examples from a Swedish cardiac care setting

INTRODUCTION: Clinical guidelines promote recognising persons with heart failure (referred to as PWHF) as coproducers of their own care. Coproduction of healthcare-involving PWHF, families and professionals in care processes-aims to promote the best possible health. Still, it is unclear how to coproduce heart failure (HF) care. This study explores whether and how Experience-Based Co-Design (EBCD) involving PWHF, family members and professionals can be undertaken online, in a Swedish cardiac care setting, to codesign improved experiences of HF care.

METHODS AND ANALYSIS: In EBCD, stakeholders' experiences are solicited to redesign healthcare services. First, we will undertake a thematic analysis of field notes from consultations and filmed/audio-recorded interviews with PWHF (n=10-12). This analysis will identify 'touchpoints' (emotionally positive/negative events that shape overall service experiences), edited into a 'trigger film'. Next, a thematic analysis of family members' (n=10-12) and professionals' (n=10-12) interviews will identify key themes mirroring their experiences. Separate feedback events with each stakeholder group will confirm identified touchpoints and key themes and identify areas for HF care improvement. At a joint event, prompted by the 'trigger film', stakeholders will agree on one area for HF care improvement. A team including PWHF, family members and professionals, led by an improvement adviser, will then plan, design, implement and evaluate an improvement activity addressing the identified problem area. A deductive thematic analysis of field notes, project documentation and stakeholder focus group interviews, underpinned by MUSIQ, will identify how organisational conditions influence the process. Quantitative measurements, describing the results of the improvement activity, will be integrated with qualitative data to strengthen the case. To reduce resource intensity, we will use online tools during the process.

ETHICS AND DISSEMINATION: The Swedish Ethical Review Authority approved the study in May 2021. The results will be disseminated through seminars, conference presentations and publications.

Background and aims

Healthcare quality improvement “will lead to better patient outcomes (health), better system performance (care) and better professional development (learning)” (1). Co-production can be understood as an approach to healthcare quality improvement. In co-production, persons with illness, their family members and healthcare professionals co-plan, co-design, co-deliver and co-evaluate healthcare services (2). Co-learning about each other’s needs and how to jointly address care areas that need to improve is a crucial part of co-producing the best possible health (3). To date, few research projects focus on exploring how co-production of healthcare services and co-learning about what matters to healthcare professionals, persons with heart disease and their family members and might play out in a cardiac care setting. Thus, the overall aim of this thesis is to create learnings about how stakeholders can improve cardiac care services thorugh co-production. This abstract focuses on the professionals’ learnings when participating in co-produced healthcare quality improvements.

The first study in this thesis aimed at describing how a small-scale model for co-production, a Learning Café, might work in a cardiac care setting. To promote further co-production with persons with heart disease, the second study aimed at exploring the barriers to and facilitators of co-production. An Experience Based Co-Design methodology is used in the third and fourth study to facilitat e co-learning about joint healthcare quality improvement among persons with heart failure, their family members, and professionals. The aims of the third study were to identify experiences of life with heart failure and its care and to identify what change s to heart failure care can be proposed based on these experiences. In the fourth study, a small group with professionals and patient and family member representatives will co-design heart failure care improvements. Prerequisites for joint healthcare quality improvement projects will be explored.

Work integrated learning – a theoretical perspective

Work-integrated learning (WIL) is here understood as an educational philosophy to enhance the careers of professionals (4). Here hands-on work experience and lea rning in a real-world setting are combined (4). In this research, healthcare professionals’ careers are enhanced when working with healthcare quality improvement, co - produced with persons with heart disease and their family members. Hence, the professionals improve their knowledge about what matters to their patients and the family members and how to co -produce quality improvement initiatives that address these needs.

Context and methods

The research is set in cardiac care in the Highland health district in Region Jönköping County, Sweden as part of system-wide efforts to promote better health for persons with chronic disease (5). The research studies are conducted as a part of the healthcare professionals’ daily wok duties. Primary care centers and a hospit al serve the 115,000 inhabitants in the health district. Heart disease accounts for a major part of the disease burden in the health district’s elderly population. Although the concept of “co-production of healthcare services” has lately become more familiar to professionals in Region Jönköping County, few departments and primary care centers have fully adopted the concept.

Study I was an organizational case study (6). Healthcare professionals tailored a Learning Café intervention aimed at increasing the sense of security in everyday life among persons with atrial fibrillation. A Learning Café is a co - produced group education program during which atrial fibrillation patients’ questions about atrial fibrillation and its treatment were solicited and then answered by healthcare professionals (7). Data collection included measurements regarding sense of security in everyday life and focus group interviews exploring experiences and learnings from participating healthcare professionals and persons with atrial fibrillation. Study II was a focus group study (8). Healthcare professionals, persons with heart failure and their family members participated in focus group interviews aimed at exploring barriers to and facilitators of co -production of healthcare services. Interviews were analyzed using deductive qualitative content analysis and the COM-B model (9, 10). Study III and IV are based on an Experience Based Co-Design project (11) aimed at improving heart failure care. Data collection includes observations of healthcare consultations, filmed or audio recorded individual interviews and meeting minutes from stakeholders’ feedback events. Data is analyzed using reflexive thematic analysis (12).

Results

Professionals participating in the Learning Café intervention reported gaining lessons about person-centered care, what matters to persons with atrial fibrillation and how to work with healthcare quality improvement. These learnings were reported to enhance work satisfaction among professionals. Persons with atrial fibrillation reported a greater sense of security in everyday life when learning more about atrial fibrillation and its treatment (13). The second study (14) improved the professionals’ knowledge about barriers to and facilitators of co-production of healthcare services. Results implied that healthcare professionals are motivated to co -produce healthcare services. However, they had limited and varying understanding of co-production as a practice. Another barrier was the professionals’ unease with power sharing with patients and family members. In the third study (15), five overarching themes mirrored the experiences of life with heart failure and its care: “I struggle everyday”, “I don’t understand heart failure”, “Please, do not ignore me!”, “How can I get involved?” and “Heart failure care can improve!”. Persons with heart failure and their family members experienced a poor quality of life and were struggling to understand and apply information about heart failure and its care. To be recognized by professionals was experienced to be a crucial part of good quality care. However, participants often felt excluded from participation in care processes. These experiences translated into anticipated care improvements such as improved information, continuity of care, improved relations and communication and invitation to be involved in healthcare. Reflecting on these findings together with persons with heart failure and their family members, professionals gained knowledge about how to improve heart failure care to meet the needs of the service users.

Societal impact and relevance

This research promotes healthcare professionals’ work integrated learning about how to ackno wledge sick individuals as persons with individual needs, rather than patients defined by a disease. Second, research findings offer lessons regarding how healthcare services should improve to meet the needs of the persons living with disease.

BACKGROUND: Co-production of health and care involving patients, families of patients, and professionals in care processes can create joint learning about how to meet patients' needs. Although barriers and facilitators to co-production have been examined previously in various health care contexts, the preconditions in Swedish chronic cardiac care contexts are yet to be explored. This study is set in the health system of the Swedish region of Jönköping County and is part of system-wide efforts to promote better health for persons with heart failure (HF).

OBJECTIVE: The objective of this study was to test the usefulness of the Capability, Opportunity, and Motivation Behavior (COM-B) model when assessing the barriers to and facilitators of co-production of health and care perceived by patients with HF, family members of patients with HF, and professionals in a Swedish chronic cardiac care context as a guide for subsequent initiatives.

METHODS: Data collection involved 1 focus group interview (FGI) with patients with HF (n=5), 1 FGI with family members of patients with HF (n=5), 1 FGI with professionals in primary care (n=7), and 1 FGI with professionals in cardiac care (n=4). In addition, patients with HF kept diaries of their thoughts regarding co-production. Using a deductive approach to content analysis, underpinned by the COM-B model, barriers and facilitators were categorized into capabilities, opportunities, and motivations to co-produce health and care.

RESULTS: The participants showed limited understanding of co-production as a practice. They appeared to view it as a privilege to be offered to patients on top of traditional care and rarely as an approach for improving health care processes. The interviews revealed the limited health literacy among patients and the struggle of professionals to convey health information to these patients. Co-production was considered to be more resource-intensive than traditional care. Different expectations of stakeholders' roles were revealed: professionals expected older patients not to want to co-produce health and care, and all participants expected professionals to be in charge of health care services. The family members' position involved trying to balance their desire to support their relatives with understanding when, how, and with whom to co-produce. Presumed benefits motivated stakeholders: co-production was recognized to motivate patients to improve self-care. However, the participants recognized that motivation to get involved in health and care decisions varies over time among stakeholders.

CONCLUSIONS: Co-production can be facilitated by the stakeholders' motivation. However, varying levels of understanding of co-production, patients' limited health literacy, unease with power sharing between patients and professionals, and resource constraints are barriers that need to be managed to promote co-produced care and better health for persons living with HF. Further research is warranted to explore how to co-produce health care services with patients with HF and how leaders can facilitate the inevitable cultural change it requires and represents.

Co-production of healthcare involving patients, families and professionals in care processes has been proposed to create joint learning about how to meet the patients’ needs, thus promoting best possible health and care. There is, however, a lack of knowledge in how healthcare organizations can be organized to be able to deliver co-produced care, also specifically in cardiac care settings. The global aim for the thesis presented here, is to explore whether, how and why co-production of healthcare services can contribute to best possible care, particularly for individuals with cardiac care needs in a Swedish chronic cardiac care setting. Here, the thesis’ first two studies are presented followed by reflections regarding next steps of the project.

Study I: Learning Café - a small scale model for co-production

Study I was an organizational case study using both quantitative and qualitative data to reveal atrial fibrillation (AF) patients' and professionals' experiences of pilot‐testing a Learning Café group education programme. Two nurses invited AF patients and partners to four 2.5‐hour Learning Café sessions. In the first session, they solicited participants' questions about life with AF. A physician, a nurse and a physiotherapist were then invited to address these questions in the remaining sessions. After each session patients rated their sense of security in everyday life on a scale of 0‐10, 10 representing “completely secure”. Study results indicate that AF patients gained a greater sense of security in everyday life, the professionals gained professional development and the organization gained knowledge about how to involve patients and family members in healthcare.

Study II: Understanding barriers and facilitators to co-production

Study II was a focus group study to assess heart failure patients’, family members’ and professionals’ perceived barriers and facilitators to co-production of healthcare. Barriers and facilitators to co-produce health and were categorized into capabilities, opportunities andmotivation care underpinned by the Capability, Opportunity, Motivation, Behavior (COM-B) model. Participants understood co-production as a service to be offered to patients on the microsystem level on top of traditional care. Limited health literacy among many patients was aggravated by professionals’ struggle to convey health information to these patients. Furthermore, co-production was considered to more resource intensive compared to traditional care. A barrier to co-production was that all participants expected the professionals to be in charge of healthcare services. However, presumed co-production benefits motivated stakeholders to co-produce. Co-production was recognized to promote patients’ and family members’ sense of security in everyday life and motivating patients to better selfcare. Participants recognized, however, that not all patients want to actively participate in healthcare decisions.

Next steps

The Learning Café pilot test exemplifies movement towards co-production, involving patients in co-design, co-delivery and co-evaluation of the Learning Café. Understanding the contextual barriers and facilitators to co-production is a key to future co-production. To manage these barriers and facilitators, healthcare leaders need to support co-production initiatives. The next step is to explore leaders’ preconditions for supporting such initiatives (study III). Finally, in study IV with details yet to be decided, lessons learnt from study I-III will be used to perform a co-production initiative in the cardiac care setting.

Background

An improvement initiative sought to improve care for atrial fibrillation (AF) patients; many felt insecure about how to cope with AF.

Objective

To reveal AF patients' and professionals' experiences of pilot-testing a Learning Café group education programme, aimed at increasing the patients' sense of security in everyday life.

Design

Using an organizational case study design, we combined quantitative data (patients' sense of security) and qualitative data (project documentation; focus group interviews with five patients and five professionals) analysed using inductive qualitative content analysis.

Setting

AF patients and a multiprofessional team at a cardiac care unit in a Swedish district hospital.

Improvement activities

Two registered nurses invited AF patients and partners to four 2.5-hour Learning Café sessions. In the first session, they solicited participants' questions about life with AF. A physician, a registered nurse and a physiotherapist were invited to address these questions in the remaining sessions.

Results

AF patients reported gaining a greater sense of security in everyday life and anticipating a future shift from emergency care to planned care. Professionals reported enhanced professional development, learning more about person-centredness and gaining greater control of their own work situation. The organization gained knowledge about patient and family involvement.

Conclusions

The Learning Café pilot test?exemplifying movement towards co-production through patient-professional collaboration?generated positive outcomes for patients (sense of security), professionals (work satisfaction; learning) and the organization (better care) in line with contemporary models for quality improvement and with Self-Determination Theory. This approach merits further testing and evaluation in other contexts.