Using stakeholders’ experiences to redesign health services for persons living with heart failure: a case study protocol in a Swedish cardiac care setting

Abstract

IntroductionClinical 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 analysisIn 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 disseminationThe Swedish Ethical Review Authority approved the study in May 2021. The results will be disseminated through seminars, conference presentations and publications.

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

“…She had the role of a facilitator during the EBCD process. The participant recruitment process, steps taken in the EBCD process and data collection procedures have been reported in detail elsewhere by Suutari et al (2022) [ 19 ].…”

“…Co-production of healthcare services has evolved and grown over time in the context of this study [ 30 ]. However, structured involvement of persons living with disease, family members, healthcare professionals and citizens in service improvement and research is not yet routinely used within the study context [ 19 ]. Thus, this study offered an opportunity for stakeholders to overcome barriers to co-production and healthcare quality improvement.…”

“…PWHFs’ and family members’ research involvement in this study included [ 19 ]: Study participation: PWHF and family members participated in observations of healthcare consultations, individual interviews and EBCD feedback events. Research management: One PWHF representative and one family member representative participated in the steering group of the research project.…”

“…The patients’ filmed or audio-recorded interviews are edited into a “trigger film” highlighting their care experiences and service touchpoints. Touchpoints are emotionally significant positive or negative events, situations or key resonating themes that shape patients’ overall service experience [ 19 ]. The “trigger film” prompts a patients’ workshop where a facilitator solicits their experiences to identify opportunities for improvement.…”