Title: Towards better quality end of life care for patients and families: using ‘circles of learning’ within NHS acute hospitals and voluntary-sector hospices to mobilise knowledge about patient-level outcome measures in palliative and end of life care.
Funder: Department of Health and Social Care

Abstract: Background:End-of-life care is reported as poor' for 10% of deaths across England, with poor symptom management, communication and recognition of dying in NHS hospitals. One main reason that poor end-of-life care persists has been the difficulty demonstrating systematically the quality of end-of-life care. Until recently, valid, reliable and responsive outcomes measures for this population have not been available, have not been implemented into practice, and have not been utilised to assess whether care is (or is not) meeting the needs of patients and families. Now however, there is robust evidence to change this. Valid and reliable measures - which capture what matters most to patients and families - are available. Clinicians are using these, but find it difficult to act on this information in a systematic way to improve care. Managers have service-level outcomes data, but do not know how to use this to demonstrate effective service delivery, inform quality improvement or shape service innovations. The obstacles to the use of this knowledge need to be addressed. Limited awareness of evidence is one of the problems, while developing shared understanding of the barriers and addressing these challenges collaboratively are potential solutions. Aim: To mobilise existing knowledge about patient-level outcome measures in palliative and end-of-life care, using collaborative circles of learning' within NHS hospitals and voluntary-sector hospices, to embed and sustain improvements in end-of-life care. Specifically, to explore: How clinicians and managers can use outcomes data to improve the care of individuals, demonstrate effective service delivery and inform quality improvement. Whether circles of learning' can contribute to knowledge mobilisation and support national roll-out of outcome measures in palliative and end-of-life care. Methods: Setting: Four London providers selected purposively for diversity in size, funding sources and population served. These consist of specialist palliative and end-of-life care teams within two acute NHS Trusts, and two hospice-based palliative care services. Work will be conducted in three phases: Phase 1: Knowledge mobilisation with two sites Circles of learning' (Horn, 2011) will be set up at one NHS acute hospital and one voluntary-sector hospice with two different groups of stakeholders (Group A: clinicians using outcome measures and Group B: clinical leads/managers/quality leads using service-level outcomes data). These circles of learning' will together identify best ways to utilise outcomes data to improve individual patient care, and how outcomes data can best demonstrate effective service delivery and inform quality improvement. Phase 2: Two additional sites Similar circles of learning' will be set up at a second NHS acute hospital and second voluntary-sector hospice, and the processes repeated. In this way, learning from Phase 1 will be brought into Phase 2. Transferability of findings beyond participating sites will be explored. The circles may combine to operate across organisations (i.e. both NHS hospitals working together and both hospices working together). Phase 3: Research Focus groups with each Level A and B circles of learning' (six-eight focus groups in total), will be undertaken to explore whether the circles of learning' approach is of value, and if could be used to support national roll out of palliative and end-of-life care outcome measures. This will be supplemented by participant observation, plus field notes, to triangulate findings. Field notes will include information on how the outcomes data is used by clinicians at each site and how the outcomes data is used to inform service delivery and quality improvement. Data from the focus groups will be recorded, transcribed verbatim and analysed thematically using NVivo 10. Participant observations and field notes will be analysed alongside the focus group findings to create case studies' specific to each context (NHS acute hospital and voluntary-sector hospices).

Lay abstract: What is the problem we want to address? Over half a million people die each year in England and Wales. This number is set to steadily increase with an ageing population. But the care of people towards the end of their life is not always good. Findings from national surveys show that - for some people - care is poor, especially in hospitals. One of the main reasons for poor end-of-life care is that it has been difficult to measure the quality of care which health services provide at the end-of-life (not just the experience of care, but whether care is improving symptoms and addressing people's needs as it should). For any one organisation, a few people and their families may report poor care - but the hospital or service needs to know about care for everyone they look after, and which areas of care are poor, so as to address the deficiencies. What is our proposed solution? We have developed a set of measures which reflect what matters most to patients who are seriously ill and their families. They are created from detailed conversations and surveys with many hundreds of people who are ill. These measures capture concerns like; whether pain, breathlessness and other symptoms are managed well or not; whether information is given clearly (and according to a person's preferences); and if appropriate family support is provided or not. These measures have been tried and tested extensively - so we know they work well - but they are only just begining to be used widely in routine clinical practice and there is limited understanding by staff (health professionals and managers) of how best to use and apply these measures once they start to collect them. So what will we do? The aim of this project is therefore to help palliative and end-of-life care teams and their managers to better understand what is known about outcome measures and to regularly use the information gathered to improve care, as they put these measures into practice. We want to ensure that the measures help improve the care of individuals and their families, but also help services identify what is going well and what is not, so that meaningful systematic changes can take place. At the same time, I will study how best to do this, so we can take this learning to a national level.How will we do it? The project will be conducted at four sites to reflect the different settings for end-of-life care; two NHS acute hospitals and two hospices (which are largely funded by charitable donations). We have tried to ensure the people seen by these four services are from ethnically diverse populations, so that we know our findings will then apply for services which see people from across different cultures and ethnic backgrounds. The project will have three phases: Phase 1: First, I will work with one NHS hospital partner and one voluntary-sector hospice to develop an approach called circles of learning' - this is a way to get those involved to work together to share knowledge, reflect on what is happening with outcome measures, and then utilise their knowledge and ideas to develop the best ways forward. These 'circles of learning' will be held for two groups; 1. doctors and nurses, and 2. managers and senior staff. Phase 2: I will then apply the same approach refined from experience in Phase 1 with the second NHS hospital partner, and the second voluntary-sector partner, to understand whether some of the same ideas and solutions work in a similar setting. Phase 3: Throughout, I will study what works well and what doesn't, through observing the health care teams in their day-to-day care of people, in team meetings, and in the 'circles of learning', as well as through focus groups, and detailed field notes about how the measures are used. The knowledge gained will be put together to provide detailed 'case studies' of what has been learnt, to inform the national use of outcome measures in palliative and end-of-life care. How will it make a difference? We have a lot of evidence about how best to measure what really matters most to people with serious illnesses and their families. These measures are being implemented nationally, but will only result in improvements in care across the UK if the information from measuring can be used systematically to change services and systems; this project will help enable this.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES);7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE