Alpaca study

Development work question Is it possible to co-develop a decision support intervention that uses real-time feedback of patients experience of shared decision-making (SDM) to change patient and professional decision-making processes before adult elective surgery to improve patient and health service outcomes? Background Over 5 million people decide to have surgery in England annually, costing over £9.5 billion. Surgery aims to improve length and/or quality of life, although there are risks that can be severe and irreversible. High-quality decision-making to undergo surgery is therefore important. National policy recommends SDM. It has inherent social value. Beyond this, SDM may reduce harms through better choices and moderate the impact of harms through greater self-management. This may reduce costs. Serious shortcomings in surgical SDM, however, have been identified and it is not used uniformly. Recent NICE guidelines recommended prioritising research in new interventions that target sustained, organisation-level SDM improvement. Advances in technology now allow the evaluation of patients experience of SDM in real-time and integration of those data into consultations before surgery, at scale. We have demonstrated the feasibility of organisational-level real-time evaluation of patient experience. Now an intervention integrating this information into clinical care to improve outcomes needs developing. Aims Project 1: Understand the views of under-served groups to inform the future development of a decision support intervention that uses real-time feedback of patients experiences to improve SDM and patient outcomes. Project 2: Improve selection, measurement and reporting of outcomes and processes for studies evaluating interventions to improve SDM for surgery Work plan MRC complex intervention development guidelines will be used. Setting: Two Trusts (Bristol/Bradford) serving diverse populations. Eight adult, elective surgical specialties. Project 1: Interviews and focus groups (20 interviews/5 focus groups) will explore views on real-time feedback of patients experience of SDM to improve outcomes for patients from the perspective of under-served groups (economically disadvantaged, minority ethnic, and older age). This will apply principles of behavioural/organisational change to inform initial development of programme theory. Project 2: Psychometric properties of SDM process measures will be discussed with patient/professional stakeholders (25 participants) and consensus methods used to select an instrument. Patient and professional partners will select primary trial outcome(s). Timelines: Projects 1 is planned for months 5-17, Project 2 is planned for months 1-3 and 16-20. Programme grant application is planned for 2025. Anticipated impact and dissemination We will: 1) provide evidence of how to design interventions to improve SDM that maximise inclusivity. 2) define how to measure patients experience of SDM to streamline evidence synthesis and reduce research waste. Results will be disseminated through conferences, peer-reviewed journals, social media and public engagement campaigns. Collaboration with organisations (NICE, NHS England, General Medical Council) will facilitate ongoing development, evaluation, and implementation of the intervention.

Background Over 5 million people decide to have surgery each year. These decisions are important and life-changing. Shared decision making (SDM) is the recommended way for patients and professionals make joint decisions about care by talking about personal preferences and values. Unfortunately, SDM does not happen for everyone. Patients say they want to be more involved in decisions. Improving SDM is therefore a research priority. We don t know how to improve SDM at a big (organisational) scale, or for under-served groups (e.g. deprived (poor) or elderly people and ethnic-minority groups). We also need better ways to measure SDM. Our research will find these answers and create a new way to improve SDM. Aims To create a new way (an intervention ) for patients to measure their experience of SDM on a big scale, to feedback this experience to care teams, and change what patients and professionals do before surgery to improve care. Work plan We will interview people in Bristol and Bradford to find out how to create an intervention that is inclusive of under-served groups. Next, we will have meetings for patients and professionals to agree the best ways to measure SDM and its impact. Future work plan We plan to create and test our intervention in different settings and explain how it works to improve patient care. A scientific study (randomised controlled trial) will then test if the intervention makes any difference to patients and the health service compared to usual care. Patient and public involvement and engagement Patients are central to the project and have been involved throughout. Patients helped define the research questions and draft this proposal. The intervention and agreed ways to measure SDM will be created in partnership with patients from different backgrounds. We will work with a patient co-applicant, patient advisory group, and patients on our steering group, ensuring the work focuses on patient needs throughout. Anticipated outcomes Knowledge about how to improve SDM for under-served groups. Agreed ways to measure SDM and its impact. This will help the health service and other researchers to improve SDM for surgery. We plan to present this work to professionals (at conferences, as journal articles) and share results with the public (social media, engagement events) and those who participated in the project. We will collaborate with organisations involved in SDM (National Institute for Health and Care Excellence, NHS England) to share information and maximise the value of our work.