Your Voice Matters, a pilot qualitative study of integrated care in Ireland

Abstract

Introduction: The Patient Narrative Project was initiated in 2016 to position the voice of patients and service users centrally in the design and implementation of Integrated Care. This paper presents the findings from Phase Two; the piloting of a qualitative survey tool called ‘Your Voice Matters’ (YVM) to capture a high volume of patient experiences and analysing these to find out the extent to which the person centred coordinated care indicators were made real during 2017. Methods: YVM utilises the SenseMaker® software tool and is underpinned by a partnership approach between service users and providers. The framework is dynamic and can be used to provide real time feedback to inform changes at local levels. The YVM framework consists of: - An online survey that utilizes the SenseMaker® software programme - Engagement plan to maximize service user participation, knowledge and empowerment - Analysis of data by staff and service users together - Identification of key themes and actions to influence the design and delivery of services The survey was available online, in a paper copy or through an app for smartphone or tablet. Results: There were 584 responses. 52% patients/ service users and 45% carers, family/friends. 63.8% of respondents were female. A national workshop of service users and providers was held to review, analyse and interpret the data from the pilot together and identify key themes using a Quantitative Evaluation Matrix. The key issues that impact on successful implementation of integrated care were identified as: Limited joined up communication between patients and healthcare staff and between healthcare settings Limited evidence of partnership approach in healthcare Challenges in accessing services is a concern for service users Patient Experience is a driver for sustainable quality health and social care services Person-centred co-ordinated care is not yet a lived reality for patients and service users despite the rhetoric in health and social care strategy Discussions: The results from Phase 2 give a clear direction of travel for person centred integrated care and show that the approach being taken currently is attempting to address the issues raised. The results also challenge us to move more rapidly towards co-production Conclusions (comprising key findings): The journey towards person centred coordinated care has only begun and although much progress has been made, there is much more to be done and more rapidly.There is a real appetite among patients, carers and healthcare professionals to co-produce solutions. Lessons learned: Clear governance and the need for senior buy is very important. Although often stated, it is not always apparent in actions. Regular communication with key stakeholders and local buy in is key to success. Limitations: There were only 584 responses.More responses will be required to inform the design and operation of health and social care at local levels. Future research: A more detailed analysis of the outputs from Phase 2 is planned which will inform Phase 3. A collaboration involving several countries in the use of this technology would be a positive development.