Title: 4ACP: Implementation and evaluation of an integrated care planning and care coordination intervention in primary care for people living at home or in a care home at risk of deteriorating or dying: mixed-method study across Scotland.
Funder: Marie Curie

Abstract: Aim: To evaluate implementation of an integrated care planning and coordination intervention consisting of four, linked actions in primary care across Scotland with people living at home and in care homes at risk of deteriorating or dying, relevant to UK health and care during and after COVID-19. Background: Advance/anticipatory care planning (ACP) encourages people to think ahead and plan for deterioration in their health, death and dying. Before COVID-19, public engagement with ACP was low, even in people with declining health. The UK pandemic required identification of people for ‘shielding’ and rapid care planning in the community. Poor communication and a focus on admission avoidance or resuscitation status led to public complaints and professional concern. A more person-centred, structured approach targeting people at risk of poor outcomes is needed. Implementation of effective, publicly acceptable care planning during and after COVID-19 benefits people with existing health inequalities and disabilities due to multiple advanced health conditions, social disadvantage, older age, and from BAME communities, throughout the UK. Design and methods: Mixed-method, implementation study of an integrated care planning and coordination intervention using 4-month case studies in a sample of 24-36 GP practices (estimated population 120,000 including care homes) from four diverse Scottish Health Boards; consisting of four work packages, and linked public consultations with patient/carer representatives and community groups to explore ways to improve public engagement in care planning and develop new patient-public information for evaluation in the case study GP practices. WP1: Screening: Primary care records searched monthly at a national, regional and practice level for people with deteriorating health using validated electronic search tools (AnticiPal); patient lists available for review at team meetings in the case study GP practices, Health Board data available for analysis/monitoring. WP2: Identification: Primary care clinicians prioritise listed patients at highest risk for care planning during team meetings. WP3: Care planning discussions: Supported by nationally endorsed communication model/resources, and public/patient information developed from the study public consultation. WP4: Electronic care coordination: Personalised care plans shared via Scotland’s Key Information Summary system. Participatory research and integrated quantitative (WP1, 4) and qualitative data (WP2-4) analysis evaluate the four care planning actions and their implementation using: search data at Board/practice level; case study interviews with primary care clinicians, care home staff, patients and families; analysis of uploaded electronic care plans; feedback from practices and primary care organisations, and end-of-study regional public meetings for key professional/public stakeholders. Sharing evaluated patient-public care planning information resources; UK webinar for consensus recommendations supports national implementation. (StaRI guidelines) Study Outcome: A publicly acceptable, integrated process for person-centred, care planning in primary care will increase the number and quality of personalised care plans agreed with patients and available to health and care professionals via the Scottish electronic care coordination system.

Lay abstract: This research looks at improving care planning in the community for people living at home or in a care home. It will help more people talk with professionals and make a personal care plan. ‘What matters to me’ is central to planning care and shared decision-making with people and their families. Care planning aims to help people get the right treatment and care in line with how they would like looked after. People with long-term health problems or a serious illness can get ill suddenly and need urgent care. Some may die from these conditions, or other illnesses including coronavirus. They often lack an up to date plan for complications or changes in their health and care. While the NHS and social care continue to deal with COVID-19 and try to maintain other health and care services, people-centred care planning really matters. Better ways to do personal care planning will have longer-term benefits too. We will work with patients, care home residents, families and primary care teams in 24-36 diverse GP practices in four Scottish Health Boards. This study looks at four actions needed for good care planning: GP practice records searched regularly to help primary care teams find people who could benefit from care planning, extra support, and in some cases - palliative care. GP practice teams prioritise people and families with the greatest needs. GPs, nurses or senior care home staff have individual care planning discussions with people at home or in a care home and/or those close to them. Care plans agreed with the person (or proxy) and shared with health and care professionals in the community and hospitals via a secure electronic record system. Patient and public representatives in the research team are advising on all aspects of the study. Patient/carer representatives and community groups across Scotland are helping develop better public information about care planning. We will test new Scottish ACP resources for patients and professionals in the study GP practices. People who have care planning discussions take part in interviews (online or phone) about their experiences and what they think of their own care plan. GPs, nurses, care staff, managers, and patient/carer representatives in the study areas and national experts and policy leads will work with the research team to make improvements to the care planning actions. We will share the study findings and ways to use them across Scotland and in other parts of the UK at a national webinar, using social media, and through publications and presentations at research conferences, education and health and care policy meetings.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.3 MANAGEMENT AND DECISION MAKING;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE