Professor Aine Carroll - IPPOSI Patient Reported Outcomes Measures conference Oct 2018
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Combining health intelligence with patient experience data
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Semelhante a Professor Aine Carroll - IPPOSI Patient Reported Outcomes Measures conference Oct 2018
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Professor Aine Carroll - IPPOSI Patient Reported Outcomes Measures conference Oct 2018
- 1. Combining health intelligence with patient experience data Prof Áine Carroll Prof of Healthcare Integration and Improvement UCD/NRH
- 2. Combining health intelligence with patient experience data Prof Áine Carroll Prof of Healthcare Integration and Improvement UCD/NRH
- 3. What can data do for us? Prof Áine Carroll Prof of Healthcare Integration and Improvement UCD/Nrh
- 19. Vision PERSON-CENTRED, CO-ORDINATED CO-DESIGNED CARE Care is… PERSONALISED Care is… COORDINATED Care is… ENABLING
- 20. Successful integrated care is primarily about patient experience. Frontier Economics 2012 “
- 21. Patient Narrative: Your Voice Matters
- 22. Definition of Person-Centred Coordinated Care in Ireland “Person centred co-ordinated care provides me with access to and continuity in the services I need when and where I need them. It is underpinned by a comprehensive assessment of my life and my world together with the information and support I need. It demonstrates respect for my preferences, building care around me and those involved in my care”.
- 23. Patient Narrative Project HSE Corporate Plan 2015-017 “…we will deliver care around the individual patient and service user and put the patient at the heart of what we do. We will do this by developing a modern model of integrated care across our hospital and community services …” (HSE Corporate Plan , 2015 – 2017)S services Definition of Quality within the Irish Healthcare System “Person centred; care that is respectful & responsive to individuals’ needs and values and partners with them in designing and delivering that care” (HSE Framework for Improving Quality in our Health Service , 2016) Origins Quality Goals Patient / Service User Voice in Health The Patient/Service User Voice The Patient Narrative Project • Clear description of the expectations of Irish service users /patients and carers as they journey through health services • Single shared definition of Person- centred Coordinated Care • Framework to hear patient/service user experiences and use these to aid partnership driven local & national integrated care Patient Representative Organisations Patients / Families / Service Users / Carers HSE / Dept. of Health HSE Programme Managers / Service Providers Quality, Safety & Service Improvement in CHO & HG Community Interests etc. Hearing Service Users’ experiences and expectations of health services “…there is a need for a clear articulation of the benefits to patients, service users and carers, backed up by regular and detailed assessment of their experience…” Goodwin et al., 2011 Project Goals
- 24. A Framework to Enable Co-Design and Co- Production in the Design and Delivery of Integrated Care
- 25. Your Voice Matters: Process Overview Jan – May 2017 June – July 2017 Sept – Nov 6th 2017 Nov 13th 2017 Jan 2018 onwards
- 27. Your Voice Matters: Listen Survey Available: • Hard Copy • Online • App on Smart Phone
- 28. Your Voice Matters: Listen -Focus on people who do or may use the ICP-OP & ICP-CD -Engaged with HSE and non- HSE patient groups and through community and hospital services for older people and people with chronic conditions -Engagement at three levels; broad to specific supported engagement
- 29. Your Voice Matters: Listen 584 respondents Patient/ Service User, Carer, family 52% respondents patients/service users 45% respondents carers, family or friend 3 & ‘other’ Ethnicity 84% respondents Irish, 4.1% Irish Traveller Community, 6.3% another white background, 4.1% other backgrounds Gender 63.8% Female and 32.7% male. 4.4% preferred not to say and no transgender respondents Age 82% respondents between 26 and 84 years old, 20.3% between 46 and 55 years Health Condition Respondents had a range of health conditions with respondents selecting between 1 and 13 conditions; 2 health conditions selected most Cultural Needs 27% respondents reported cultural needs met, 60% reported ‘not an issue’, 13% reported ‘to some extent’ and 2 respondents reported ‘not met’ Healthcare Setting Many respondents selected more than one setting Hospital settings were selected most (ED 299, hospital ward 240, hospital clinic 150). Of community settings, GP was selected 209 times, own home 88 times, day care centre 54 times, health centre 45 times, nursing home/residential home 20 times and hospice (1) Healthcare Staff Many respondents selected more than one member of healthcare staff. Hospital nurse, hospital doctor and consultant were selected most by respondents, 335, 313 and 282 respectively In the community, GP was selected most times (215), Public Health Nurse (67) and Community Nurse (47) CHO Area CHO 1: 59 CHO 2: 70 CHO 3: 67 CHO 4: 91 CHO 5: 139 CHO 6: 50 CHO 7: 117 CHO 8: 51 CHO 9: 83
- 30. What does it mean? •Many survey respondents are not experiencing person-centred care •Many staff are not successfully conveying empathy, dignity and respect to patients •Conversations between health staff and patients focus mostly on the medical condition and not the impact of this on the person and his or her life •Decisions about treatment are based most on health staff knowledge and health service resources, with limited input from what the patient wants
- 31. What does it mean? • Many people are not experiencing co-ordinated care during their health and social care experiences • 2 out of 3 people have experienced disruption when trying to have their health and social care needs met • 2 out of 3 people do not experience team decision making • ¼ of people do not know who made decisions about their treatment and ¼ don’t know what’s happening after the experience was over • For more than half of people follow-up is happening • Not knowing what is happening is disempowering for people
- 32. What does it mean? • The largest cluster of experiences are indexed towards accessing services after an uncomfortable delay. Keeping patients informed during the waiting period is essential as well as increasing access to services • Keep the patient perspective at the centre when measuring the impacts of services • It is positive that over 50% of people got information that was practical and/or easy to understand • Over a quarter of people got information from healthcare staff that was conflicting • Highlights the importance of understandable, practical information to being in control of one’s health
- 33. Your Voice Matters: Analyse PCCC Domains
- 34. Your Voice Matters: Analyse Ideas for Improvement Acts of Kindness
- 35. Your Voice Matters: Influence Story Migration What needs to change so that there are more stories in the centre of this triangle? • Co-ordination • Care-planning • Communication • Partnership
- 36. Your Voice Matters: Co-design & Co-production National • Design and development of Integrated Care Programmes (Older Persons, Prevention & Management of Chronic Conditions, Children, Patient Flow) • Baseline of how people experience services • National programmes and frameworks • Evidence-informed ‘Urgent and Emergency Care: snapshot in the Irish context’ which supports the HSE Transformation of Urgent and Emergency Care Project Local • Local implementation of national frameworks; local evidence informed prioritisation of actions plans for national strategy • Local identification an planning of service improvements; local data & local workshops • ICP-OP Pilot site Service Improvement Workshops and plans • Contribute to the service user representative voice and progress co-design and co- production philosophy (e.g., QID patient advocacy, National Patient Forum)
- 37. Your Voice Matters: Influence and Co-produce ICP – Older Persons Service Improvement The cycle as to how the voice of older people collated through Your Voice Matters will be used to improve local services for older persons. Local ICP-OP steering groups, Age Friendly Ireland and Older Persons Council provide an integrated network through which improvements can be driven.
- 38. • Your Voice Matters provides a framework to enable co-production and co-design in the delivery of integrated care • The data from Your Voice Matters pilot provides that first check of how the journey is going from the perspective of the people who use services. • It has the ability to provide real-time qualitative and quantitative data about the experiences of people and allow us to see the person behind the statistics “What matters is what gets measured … “ (National Voices, 2017) …..what gets measured is what matters?? Your Voice Matters Pilot: Conclusions
Notas do Editor
- The context, the origins and the deliverables for the project. The Patient Narrative Project was initiated in 2016 through the Clinical Strategy and Programmes Division, HSE to position the voice of patients and service users centrally in the design and implementation of Integrated Care through the four Integrated Care Programmes (ICPs). As a result it supports progress of key objectives from the HSE Corporate Plan (2015 –17), Framework for Improving Quality (2016) , National Strategy for Service User Involvement (2008 – 2013)and addresses the importance of understanding and responding to the experiences of service users as one component in the development of sustainable quality health services alongside and equal to clinical effectiveness, clinical safety and staff experience. For integrated care in particular the service user is seen as ‘the organising principle’; looking at integration from the perspective of the service user rather than from the perspective of service processes The Patient Narrative Project provides one means by which the patient voice is sought and heard within the HSE to support the design and development of services. It complements other methods for capturing feedback from patients such as The National Patient Experience Survey, Listening Groups and Your Service Your Say. the HSE, IPPOSI (Irish Platform for Patient Organisations, Science and Industry) and the School of Nursing, Midwifery & Health Systems in University College Dublin worked with patients, service users, caregivers and caregiver representative organisations to identify what people want from health services particularly when they need care over time from multiple healthcare staff or in multiple settings. During this work the voices of service users, individuals who support service users and patient representative groups were heard within an ethos of researching with, rather than researching on people. Analysis of the experiences heard resulted in three overarching domains containing a total of nineteen statements which represent what people want to experience within person centred co-ordinated care in Ireland. The findings also led to a definition of person centred co-ordinated care: “Person-centred coordinated care gives me the services I need, when and where I need them. It is based on a full understanding of my life and my world, combined with the information and support I need. It respects my choices, building care around me and those involved in my care” The domains, statements, and definition provide an opportunity to enhance the quality of the healthcare experience by identifying objectives for staff and expectations for service users within person centred co-ordinated care. They form the basis of the Your Voice Matters survey that allows service users the opportunity to tell us how we are doing on the journey to person-centred : Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient Narrative Project for Person-centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.
- this framework will provide continuous feedback to the health service on how its services are experienced by its users in the form of both qualitative and quantitative data. The framework asks patients to tell about their experience of health services in their own words. It then asks them to think about this health experience in relation to the necessary elements of healthcare that treats them as individual people, meets their needs, is flexible enough to enable timely access and provides responsive care in the right place. That is, to consider how the experience was in relation to the person-centred coordinated care that patients want to experience and we the health and social care services want to deliver. The experiences can be analysed to identify the themes and issues that need to be factored into the design of service provisions and professional training and development. In essence Your Voice Matters looks to progress and instil the guiding philosophy of ‘patients as partners’ in health; to support progress in the empowerment and engagement of people, one of five interdependent strategic goals proposed by the WHO (2015) to progress integrated people-centred health services. Integral in the Your Voice Matters framework for engagement with patients has been the involvement of patients / service users and carers throughout, with the constructs of co-design and co-production kept to the fore.
- The Your Voice Matters framework consists of: An online survey that utilizes the SenseMaker® software programme and is grounded in the voice of patients from phase 1 of the Patient Narrative Project 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 This is how the framework was implemented – what it looks like to run it.
- YVM utilises the SenseMaker® software tool and is underpinned by a partnership approach between those who use health and social care services and those who provide them. The Your Voice Matters 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
- Your Voice Matters is a mechanism or vehicle to allow voices from people in all sectors of society to be heard. It allows for those who can complete it in their own homes online to do so but also allows for 1:1 support to complete, group completion (in a day care centre for example) or peer support (e.g., in the Traveller Co community where members of the community gathered the stories from their peers). It takes time. Engagement with local groups included attendance at meetings and promotion of the survey through COPD Ireland support groups, Diabetes Ireland Education groups, National Age Friendly Network and local Older Persons Councils. In order to hear the voices of people in more vulnerable sectors of our community specific engagement was also carried out with a defined number of Traveller Communities in Dublin, Galway and Kerry, with Dublin Simon Community, with the Deaf community in Kerry and contacts were made with the HSE Social Inclusion Division and a variety of local ethnic minority groups. Within more vulnerable communities a peer education approach was taken whereby members of the communities were supported to be ‘story gatherers’ within their own communities. ‘Narrative circles’ were used in some day care facilities as a means of supporting older people to complete the survey in small facilitated groups and one to one support was given in longer stay facilities. A number of regions in the country undertook specific promotion of the survey with staff and patients including, Donegal Long Term Conditions Team and Kerry Community Development Team. The health services in the South East (CHO5) as the lead CHO pilot area worked with South Tipperary Integrated Care Programme, the South East Recovery College (MHS), Integrated Care Chronic Disease Management and Social Inclusion Services.
- An engagement strategy for the pilot focused at three levels for the populations relevant to the Integrated Care Programme for Older Persons and the Integrated Care Programme for People with Chronic Conditions: National level patient organisations groups and citizen groups both HSE and Non-HSE Local HSE services and pilot/demonstrator sites for the targeted populations Pilot and demonstrator sites for the integrated care programmes for Older Persons and Prevention and Management of Chronic Conditions (see figure 1)
- Now 657 respondents. This gives an overview of the demographics of those who participated. 32% of stories currently in the system are from people aged 65 and over
- On the left hand side are the domains of the person-centred coordinated care from IPPOSI, HSE and UCD work of service user perspective. The middle column outlines key principles of IC related to patients and staff and on the right hand side is the current reality as described by patients and service users.
- Patients are asked to identify acts of kindness and idea for improvement - There is a strong correlation between what people valued and what they would like to see more of. The human factors of communication, empathy, kindness rate highly in both.
- How can this types of data collection, which gives us qualitative and quantitative data in real-time on an on-going basis, change the experiences of patients and service users?
- Specific use of the Your Voice Matters framework within integrated care programmes, CHO pilot site
- The Model of ICP-OP demonstrates the use of YVM for co-production