Involving Patients, Caregivers and Communities Dr Nick Goodwin, CEO, IFIC From Concept to Reality, International Summer School on Integrated Care, Pepper’s Salt Resort, Kingscliff, NSW With thanks to Don Redding and Lourdes Ferrer

What do people want from an integrated care service?

The reality of care: patients manage themselves already Need for people engagement Need for patient empowerment Hours with professional / NHS = 3 in a year Hours of self care = 8757 in a year Adapted from Goodwin 2008 and 2014

What matters to service users People care about services that are coordinated around their needs – person centred care coordination National Voices 2012 “I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me”

Reality Check How does the National Voices narrative of the user’s perspective affect the way you might think about care design? If you applied this vision to your own project, what would be the essential elements to put in place to make it happen?

Enabling people-centred care: the key factors

Key concepts in People Centred Care People’s “Empowerment” refers to the process by which people develop their intrinsic capabilities to increase control over the factors, decisions and actions that affect their health and care and the process of gaining power externally over them. People’s “Engagement” refers to the process by which people increase their degree of active involvement in caring for themselves and in shaping their health determinants. Activation Coproduction Intrinsic capabilities includes: autonomy, freedom, knowledge, self-esteem, self-confidence, and feelings of control over health or life. Increase control for example by gaining access, partners, networks and/or a voice. Gaining power Is a process of re-negotiating power in order to increase control that can only come from the “people” themselves. It recognizes that if some people are going to be empowered, then others will be sharing their existing power and giving some of it up (Baum, 2008). the role of the external agent is to catalyse, facilitate or "accompany" the community in acquiring power. Engagement implies that people balance health ad care knowledge with his own needs, preferences and abilities in order to promote health, prevent and manage ill health and interact with health systems (CAH 2010). It focuses on behaviours and actions of people relative to their health and care. It is not synonymous with compliance. It can be at the level of: decision making, care planning, care; system design, provision and assessment and policy making. 11

Key concepts in People Centred Care People’s “Activation” describes the knowledge, skills and confidence a person has in managing their own health and health care. Co-production” is the co-development of public services between professionals, people using services, their families and their neighbours in the context of an equal and reciprocal relationship. Activation

Person Centred Care: Key Success Factors

Developing People-Centred Services that Empower and Engage People: Key Strategies To Individuals and Families To Communities Improving health literacy Shared decision-making between people and health professionals Supported self-management Personal care assessment and planning Giving people access to personal health records Community participation Community awareness Community delivered care Patient and user groups Addressing structural factors that marginalise ‘at risk’ communities

Improving health literacy Improving health literacy is a common strategy of many countries. Common strategies include: mass media campaigns, the development of targeted educational packages and lifestyle programmes – e.g. supported by schools and care professionals e-health Strategies that encourage lay, parental and family-led advice and support in local communities have also been adopted. The evidence for positive benefits is strong and includes enabling people to better manage their health conditions and control risk factors associated to changes in lifestyle

Shared decision making Promotion of patient and family involvement in decision-making about care and treatment options remains under-developed but is becoming a common element of health care in many countries The evidence for positive benefits is strong with shared decision-making being associated with: the development of more appropriate interventions that better match patient preferences and needs; reduced misdiagnosis; greater patient satisfaction and independence

Supported self management Support for self management is widely used in advanced economies for conditions such as asthma, diabetes mellitus and heart failure Self-care requires pro-active patients, but there is often a lack of willingness or capability to engage – hence, effective self management often includes a focus on the patient’s motivation and goals The evidence is highly positive in terms of: improving health status Improving quality of life reducing unnecessary hospital visits and/or hospital readmissions

Personalised care assessment and planning Comprehensive and holistic assessments of needs, including the development of personalized care plans, have been associated with greater patient satisfaction, improved care co-ordination and reduced cost Personal care assessments and plans add additional time and costs that might outweigh the benefits of adoption to all but the most complex cases. Electronic care records, including a patient’s access to them, can better support the process of care planning leading to better care co-ordination and cost reduction

Community participation and awareness Community participation in planning and goal setting is a widely used strategy The evidence is variable and context-specific, but the approach can help communities examine the underlying factors behind health problems, raise community awareness, and support health improvements Interventions that support education and awareness with participatory groups have been shown to improve health outcomes where this is culturally sensitive and targeted to specific health problems. There is evidence for the need to supporting social networks and social integration since cultural and political characteristics in local communities may have unpredictable dynamics

Community delivered care The development of community health workers and the role local people in being partners in care has good evidence in: supporting better access to care, promoting legitimacy and trust, and offering new opportunities for peer-to-peer learning and strengthened advocacy The approach may be difficult to sustain since it requires a new type of partnership between healthy professionals and the community

Lessons for policy and management: Purpose and target group Authenticity of ‘community’ Community leaders External people cannot lead – support internal leaders Transfer power and risk to the community Incremental realism Long-term process to build sustainability User-reported outcomes – measure, measure, measure Avoid provider-driven outcomes that are not achievable Focus on quality improvement and added value / social impact

CASE STUDIES

Case Example: Eksote, Finland Established integrated care organisation in 2010 combining primary/secondary care with elderly/social care. Goal is equal access to care across a rural municipality with a focus on prevention and citizen responsibility in own care Eksote provides all health, family and social welfare and senior services for 133,000 citizens some 200km apart. Village associations have a key part to play to promote health and wellbeing and prevent social and medical problems – e.g. themed events for the hard of hearing and with various sports federations

Case Example: Eksote, Finland Established integrated organisation in 2010 combining primary/secondary care with elderly/social care Goal was equal access across a rural municipality Focus on prevention and citizen responsibility in own care Remote monitoring and health coaching Mobile health units – use of webcams, broadband and video phones Pilot phase had 185 patients Care team was a GP, 2 WTE nurses, part-time home care workers, IT engineers and data analysts Patients felt less isolated and more secure Medication use reduced Remote consultations reduced costs by 50% compared to usual care Reduced travelling to appointments

Case Example: Eksote, Finland The intervention consisted of regular measurements of physiological and health parameters in addition to personalised health coaching. Participants receive the following equipment at their homes: Mobile phone with specific software for manual and/or automatic reporting of data. Blood pressure meter with Bluetooth connection to the mobile phone. Weight scale. Pedometer Personal health coach to every patient (trained nurse) Initial assessment based on holistic needs leading to a care plan for self-management Follow-up calls once per month to review health status Motivational interviewing to empower people with recommended life-style changes Web application to enter and view data and adjust plan Self-generated reminders triggered by health status View the project at: https://www.youtube.com/watch?v=9VAiEeODspI

Case Example: Eksote, Finland Home-based rehabilitation services, with significant use of remote monitoring and health coaching including an ER “in your living room” rapid response service Nurse-led mobile health units across rural villages. Services include: Nurse consultation Health counselling Regular health checks Treating wounds Capillary blood work analysis (e.g. glucose) Vaccinations and medicines Dental care Physiotherapy Impact includes an 88% reduction in need for hospital care; 56% reduction in the need for home-based visits; and a 30% cost reduction to the care system

Case Example: Te Whiringa Ora, Eastern Bay of Plenty, New Zealand

Case Example: Te Whiringa Ora, Eastern Bay of Plenty, New Zealand Organisation Merger of three primary care agencies in the Eastern Bay of Plenty region to create the Eastern Bay Primary Care Alliance (EBPHA) Collaborative model with a community-based health and disability support provider Objectives providing access to care – extending the health care role into the home reducing disparities in health outcomes improving primary care management of chronic and long-term conditions, reducing preventable hospital admissions and hospital length of stay, providing a holistic patient-centered and whānau ora approach to care, and educating service users and their whānau in self-management of chronic care lifestyle changes so they better understand their conditions Target population Maori and Pacific Communities The initial cohort targeted by the program was 139 patients with chronic respiratory disease who had been admitted to hospital two or more times or had six or more ambulatory care visits in the past 12 months. The program was subsequently expanded to include all chronic diseases.

Case Example: Te Whiringa Ora, Eastern Bay of Plenty, New Zealand Approach to care The TWO program includes: assessment, care coordination, telephone support, and telemedicine monitoring as a tool for self-management education. These services are delivered by paired nurse and community-based care coordinators. These skilled case managers work alongside the person and their family/whanau to develop a set of personal goals through one-to-one support The goal is to stabilize patients in the community and improve self-management. The model assumes that the average time in the program is 6 months.  

Case Example: Te Whiringa Ora, Eastern Bay of Plenty, New Zealand   Results in brief Established February 2011, evaluated and expanded in Winter 2012 In a cohort of 53 patients initially enrolled in the program, the number of COPD bed days used in the 12 months after enrolment were 40% less than 12 months before enrolment Overall rate of utilization fell by 12% after enrolment. Once enrolled, the initial cohort of 53 TWO patients had more days between COPD hospital visits compared to their own pre enrolment utilisation. The average cohort 1 patient gained an additional 179 admission free days or less than half as frequently to hospital for COPD.

Case Example: Community Engagement Nuka Health System, Alaska Mission: Working together with the Native Community to achieve wellness through integration if health and other services Vision: A Native Community that enjoys physical, mental, emotional and spiritual wellbeing Key approach: Shared responsibility, commitment to quality, family wellness “Consumer-owners” Katherine Gottlieb, CEO SouthCentral Foundation

Alaskan Native leadership has ownership and management of care system since 1997 60000 people south of Anchorage and spread across 1800km of land and islands Range of services including: inter-disciplinary primary care; dentistry and optometry, behavioural health, outpatients, home care – case management telehealth self-management Focus on rights and responsibilities approach Some results since 1996-present: 95% enrolled in primary care, up from 35% Same day access for routine appointment, down from 4 weeks Waiting list for behavioural health consultation eliminated 36% reduction in hospital days 42% reduction in ER 58% reduction in specialist clinics High patient satisfaction with respect to culture and traditions Staff turnover reduced by 75%

Case Example: Engaging Communities as Partners in Care in the English NHS Community engagement, incorporating the voluntary sector, proved central to achieving better care experience and outcomes at less cost in all the case sites. Voluntary sector brought into the core multi-disciplinary team. Volunteer co-ordinators discuss cases and develop care plans Community groups engaged as partners in care and take on specific support role All sites placed a premium on building community awareness and trust with local populations as a strategy to ensure people knew their services were available and would recommend and signpost friends and family to the programmes more often and before they fell into crisis.

Case Example: End of Life Care, Midhurst, England Awareness-raising and relationship-building GPs, community staff, hospital consultants, volunteers and local people strengthening its ability to ‘capture’ people nearing the end of life before, or very soon after, a hospital admission.  Holistic care assessment & personalised care plan A single assessment process examines both the health and social care needs of the patient and their family. It also takes into account their personal choices about future care and treatment options. Multiple referrals to a single-entry point The service accepts referrals from any health professional and also local people. All referrals come into the service and are assigned to a clinical nurse specialist from a single-entry point. Dedicated care co-ordination The care co-ordinator has a number of roles: acting as the principal point of contact with the patient and their family; effectively co-ordinating care from within a  multidisciplinary team and liaising with the wider network of care providers. Rapid access to care from a multidisciplinary team Both professionals and volunteers can be rapidly deployed by the service to provide care or support to meet the needs of people living at home. The service operates 12 hours a day, with access to an on-call clinician out of hours.

Case Example: End-of-Life Care, Midhurst, UK Total assumed cost of 1000 patients in the last year of life under the Midhurst model was 20% less than care in other settings (hospital and hospices). The cost savings were due to fewer stays in hospital in the integrated model of care Noble, B., King, Nigel, Woolmore, A., Hughes, P., Winslow, M., Melvin, J., Brooks, Joanna, Bravington, A., Ingleton, C. and Bath, P.A. (2014) Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK. European Journal of Cancer Care. ISSN 0961-5423 (In Press)- http://eprints.hud.ac.uk/20267/1/noble_et_al.pdf

Conclusions Strategies that support people-centred care can help to achieve the ‘Triple Aim’ in health system reform: improved user experiences, better care outcomes and more cost-effective care systems Across the 4 case studies, common factors included: Building activated patients to self-manage their health Developing communities to become partners in the care system in both planning and delivery Developing inter-disciplinary teams in primary care settings to provide culturally-sensitive care Developing innovative approaches to reach the needs of hard to reach groups and those living in rural areas Case management of complex cases Focusing on quality of life as much as quality of care – i.e. health and wellbeing and goals-based approaches to care Intervening early before people require specialist or hospital care

Reality Check Do the case examples and presented evidence convince you more than the National Voices narrative? What elements of people-centred care coordination might be prioritised in your own project?

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