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Markella Boudioni,1 Susan McLaren,2 Graham Lister2 1NIHR Imperial Biomedical Research Centre & Patient Experience Research Centre, Imperial College London, 2Institute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UK Background: Comparison of patient empowerment (PE) policies in European countries can provide evidence for improvement and reform across different health systems. It may also influence patient and public involvement, patient experience, preference, and adherence.Objective: The objective of this study was to compare PE within national policies, systems, and structures in England and Greece for achieving integrated people-centered health services.Methods: We performed a critical search and review of policy and legislation papers in English and Greek languages. This included 1) general health policy and systems papers, 2) PE, patient and/or public involvement or patients’ rights policy and legislation (1990–2015), and 3) comparative or discussion papers for England and/or Greece.Results: A total of 102 papers on PE policies, systems, and structures were identified initially; 80papers were included, in which 46 were policy, legislative, and discussion papers about England, 21 were policy, legislation, and discussion papers about Greece, and 13 were comparative or discussion papers including both the countries. In England, National Health Service policies emphasized patient-centered services, involvement, and empowerment, with recent focus on patients’ rights; while in Greece, they emphasized patients’ rights and quality of services, with recent mentions on empowerment. The health ombudsman is a very important organization across countries; however, it may be more powerful in Greece, because of the nonexistence of local mediating bodies. Micro-structures at trusts/hospitals are comparable, but legislation gives more power to the local structures in Greece.Conclusion: PE policies and systems have been developed and expressed differently in these countries. However, PE similarities, comparable dimensions and mechanisms, were identified. For both the countries, comparative research and these findings could be beneficial in building connections and relationships, contributing to wider European and international developments on PE, involvement, and patients’ rights and further impact on patient preferences and adherence. Keywords: patient empowerment, patient involvement, patients’ rights, England, Greece, national health policies&nbsp

Markella Boudioni,1 Nina Hallett,2 Cristina Lora,2 Wendy Couchman2 1Patient Experience Research Centre (PERC) and NIHR Imperial Biomedical Research Centre (BRC), Imperial College London, 2Faculty of Health and Social Care, London South Bank University, London, UK Purpose: This article presents the emotional journey and experience of powerlessness of integrated care service users and carers. Materials and methods: The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model. Results: The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future. Conclusion: Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported. Keywords: visual methods, collaborative research, patients, complex conditions, UK&nbsp

Markella Boudioni, Susan McLaren, Ruth Belling, Leslie WoodsInstitute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UKAim: To explore tuberculosis (TB) service users' experiences and satisfaction with care provision.Background: Thirty-nine percent of all new UK TB cases occur in London. Prevalence varies considerably between and within boroughs. Overall, research suggests inadequate control of London's TB transmission; TB has become a health care priority for all London Primary Care Trusts. Service users' experiences and satisfaction with care provision have not been explored adequately previously.Methods: A qualitative research design, using semi-structured face-to-face interviews was used. Ten service users, purposively selected in key risk groups across London, were interviewed. All interviews were digitally recorded with users' permission, transcribed verbatim, and analyzed thematically.Results: Participants were treated in local hospitals for 6–12 months. Treatment was administered by TB nurses to inpatients and outpatients receiving directly observed therapy in consultation with medical staff and home visits for complex cases. Two participants did not realize the importance of compliance. Overall, they were satisfied with many TB services' aspects, communication, and service organization. Early access, low suspicion index amongst some GPs, and restricted referral routes were identified as service barriers. Other improvement areas were information provision on drug side effects, diet, nutritional status, and a few health professionals' attitudes. The effects on people varied enormously from minimal impact to psychological shock; TB also affected social and personal aspects of their life. With regard to further support facilities, some positive views on managed accommodation by TB-aware professionals for those with accommodation problems were identified.Conclusion: This first in-depth study of TB service users' experiences across London offers valuable insights into service users' experiences, providing information and recommendations for a strategic framework for TB service organization and delivery. Overall, further research is needed; TB services – local, national, and international – need to be more closely aligned with service users' complex needs.Keywords: qualitative study, interviews, TB, service organization, services improvement