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Meaningful AND Measurable Exploring the use of personal outcomes information in health and social care Data Retreat Report Background A two day residential data retreat was held at the University of Edinburgh in March 2012. Core funding was obtained from the University of Edinburgh College Knowledge Exchange fund by Ailsa Cook, supplemented by funding from the Community Care Benchmarking Network (CCBN), The Public Policy Network at the University of Edinburgh and by the Institute for Research and Innovation in Social Services (IRISS). The overall aim of the retreat was to provide an opportunity for practitioners, managers, information specialists, policy makers and researchers to work together to explore the practical and conceptual issues underpinning the capture, analysis and use of information on service user and carer outcomes in health and social care settings. The intention was to achieve this overall aim by addressing the following objectives: Begin to establish a shared language for discussing the capture, analysis and use of information on service user and carer outcomes Consider the conceptual and practical issues underpinning the capture, analysis and use of information on service user and carer outcomes. Identify and share current practice in this area. Identify gaps and areas where capacity and skills need to be addressed Develop an action plan for addressing these issues Most of the available time was devoted to group work, allowing individuals from diverse organisations to work collaboratively to address the identified objectives. Gordon Smith from the CCBN facilitated an exercise which involved delegates working in pairs, role-playing outcomes focused conversations between a service user and a practitioner, who recorded the outcomes in a pro-forma. For most of the groupwork exercises, groups recorded their key messages on flipcharts which were used to feed back to plenary sessions, allowing key themes to emerge. The flipcharts were taken away after the event, so that the key themes could be collated, as set out in pages 2 to 4. There were also a limited number of inputs, as follows: Measuring outcomes: imperatives, challenges and strategies, Emma Miller, University of Strathclyde Observations from a sociological perspective, Richard Freeman, University of Edinburgh To what extent is personal experience measurable? Lessons from research into patient experience and quality of life, Pam Ramsay, University of Edinburgh Current practice in the capture, analysis and use of outcomes, Bridey Monger and Nigel Henderson, Penumbra 1 Day 1 focused largely on setting the context and sharing current practice and issues, while Day 2 involved pinning down the issues in order to develop an action plan. At lunchtime on day 2, delegates were joined by members of the Joint Improvement Team and the Care Inspectorate, with a view to discussing key recommendations with representatives from national bodies. The organising group, who co-facilitated the event, consisted of Ailsa Cook, University of Edinburgh, Gordon Smith, CCBN, Ellen Daly, IRSS and Emma Miller, University of Strathclyde. A full list of delegates is available at the end of the report. Overarching messages A central finding from the data retreat was that it is not possible to look at issues around the capture and use of outcomes information in isolation. It was evident from the discussions that participants viewed wider issues of culture, systems, practice and policy as inseparable from the more specific issues around outcomes data. Key messages from these discussions included: • To realise the benefits of an outcomes approach, it is essential to start from the person not from system priorities • There is considerable confusion in the use of language surrounding the outcomes agenda. Different agencies need to develop a shared understanding of the language and use it consistently • Good quality conversations are essential to support an outcomes focus, from frontline practice, through to policy level • Practitioners need continued support through positive leadership, and outcomes focused supervision – ‘consistent reinforcement of the dialogues throughout the organisation’ • The culture change involved is significant, including the shift from focusing on deficits to focusing on capacities and strengths • Because no one organisation can achieve the changes alone, collaboration between agencies, including local authorities, the NHS, third sector and regulatory bodies, is key. A network is essential and participating organisations were viewed as having a key role in this • The commitment to collaboration will be tested by the currently competitive environment • Although there are policy drivers which reference outcomes, there are also policy barriers, particularly the prevailing performance culture, with a focus on targets not outcomes One approach or many? There was ongoing discussion as to practicality and desirability of developing a core set of methods and tools for capturing outcomes data that could be implemented across organisations. Participants were keen to learn from good practice elsewhere, but simultaneously wanted to ensure that systems and processes were sensitive to their local context. There was agreement that whilst methods for capturing , analysing and reporting on outcomes data needed to be specifically tailored to local contexts there was potential to share a common overarching approach to the task, including 2 the philosophy and assumptions underpinning this work. There is also scope to share the use of specific tools, which could be applied in different contexts. Core themes By the end of the first day, it was possible to identify five key themes which related directly to the capture, analysis and use of outcomes information. On the second morning, participants elected to participate in a working group on one of the five key themes identified: scale measures, recording outcomes, a shift in thinking from attribution to contribution, using qualitative and quantitative data and using outcomes information. These themes are briefly described below, with a summary of key discussion points from the two days, and the recommendations put forward for each of them. Scale measures Visual displays such as spidergrams can be appealing to both service users and practitioners Words can be preferable to numbers for different reasons: numerical scales can disrupt the conversation; it can be more challenging for people with cognitive impairments to manage numerical scales, and numbers can be more difficult to interpret in general –‘what does a 3 mean? ‘ Need to ensure that the person is not judged or made to feel a failure if they do not ‘improve’ Need to promote consistent use amongst practitioners Need to consider the appropriateness of each scale to the client group. Some client groups are likely to achieve significant progress on outcomes within a short time but others may be very different Need to consider that outcomes are not just about measuring change! They can also be about avoiding or slowing deterioration while retaining some quality of life Recommendations • Clarify the purpose of different scale measures • Guidance is needed on the purpose and use of scale measures Recording It should not be assumed that practitioners will easily to adapt to an outcomes focus, when systems have focused on processes, deficits and tasks for so long There was broad agreement that there is no such thing as the perfect tool. However, there were different views about whether a few key tools should be selected and promoted to all agencies, or whether it was preferable to develop tools in-house, albeit through adapting existing models Part of the challenge for the public is that many people don’t know where to start when asked about what is important to them. Low expectations influence both identification of outcomes and measurement: ‘Do people know what they want? Is it limited to what they know?’ Recommendations 3 • A glossary of terms would help to develop a common language • Upskill staff in outcomes focused conversations, including through the modelling of outcomes focused conversations in supervision, and continued sharing of practice examples Attribution/contribution Need to move from the futile attempt to establish clear cause and effect with outcomes, or attribution, to understanding how different individuals and agencies contribute towards outcomes The concept of contribution is more person–centred and enabling, and less paternalistic, because it allows consideration of the person’s contribution towards their outcomes, not just services Need to ensure that everyone is working towards the same outcomes, while developing a better understanding of the role that different parties play, which allows services to articulate their role More honesty and openness is needed about limits and possibilities of what can be achieved in contributing towards outcomes, instead of all agencies trying to claim they can do it all Recommendations • Articulate and promote a better understanding of contribution rather than attribution, particularly in the context of greater integration • Focus on outcomes to support a shift from output focused targets Qualitative and quantitative data There is a need for confidence building with qualitative data Need to triangulate outcomes data from different sources Need to explore how Talking Points fits with other outcomes tools Efforts should be made to feed outcomes information back into the organisation – represented for practitioners in a clear and understandable way Recommendations • Need to make a business case for a co-ordinated approach to triangulating data, through gathering existing evidence • Need pathfinders based working collaboratively towards a national framework Use of information Need to investigate what is working and what is not with outcomes, while paying attention to the specific context within which the data are collected Develop an understanding of what works for whom in what circumstances Need to look at outcomes longitudinally including development of pathways 4 It needs to be more about learning and development than performance Conversations about outcomes need to be taking place all the way up the tree Information needs to be taken to planning groups and the role of commissioning is critical Survey data is inconsistent with outcomes data from conversations and any use of surveys in the mix needs to take this into account Recommendations • There should be an overarching framework under which outcomes are recorded and measured – like SHANARI/GIRFEC in children’s services • Make better use of existing networks to address the identified issues, such as the CCBN and IRISS, with information shared across partnerships and providers Evaluation After the event 14 participants provided feedback via survey monkey. The findings from these respondents were overwhelmingly positive with everyone reporting that attending the event had led to new insights, that they had developed connections and networks helpful to their work and that they will use the learning in their work. Analysis of the open ended responses highlighted strong support for holding a similar event in the future and the importance of hearing from a range of perspectives, including research. Respondents identified a range of ways in which they were taking this work forward and there was strong consensus as to the need for a co-ordinated response to the issues discussed at the data retreat going forward. Next steps The data retreat brought together a range of individuals who have been working on the outcomes agenda for some time. While the event involved revisiting many of the challenges involved , there was also a sense of progress and a shared sense of direction, as one group recorded on their flipchart: ‘The level of consensus in the room is very encouraging.’ There are a number of processes in place to build on this momentum and to take forward the recommendations from the retreat. The Community Care Outcomes Community of Practice is already established and will be used to promote ongoing sharing of the learning from participants at the data retreat and more widely. Participants are encouraged to join the community of practice (if they are not already members) and participate in the discussions on this forum. The community of practice is accessed through the Local Government Association Knowledge Hub https://knowledgehub.local.gov.uk/web/khub . If you are not already a member you can register from this web link and then use the search function to find the Community Care Outcomes Group. 5 To take forward some of the more complex aspects of this agenda, Ailsa Cook and Emma Miller are applying for funding from the Economic and Social Research Council for a knowledge exchange project. The project will involve close working with people in partnerships and provider organisations to explore the extent to which research approaches and techniques can be used in practice settings to support this work. If you are keen to get involved in this work or would like more information please contact Ailsa or Emma, ([email protected], [email protected] ). IRISS are embarking on a specific project to support the use of outcomes information. This project will include a particular focus on recording and the use of data visualisation tools. For more information please contact Ellen Daly ([email protected]). The Scottish Community Care Benchmarking Network will provide a co-ordinating function, to ensure that developments in this area made by a wide range of stakeholders are joined up. They are in the process of developing a project plan and will share this more widely in early May. For more information or if you are keen to feed into this process please contact Gordon Smith ([email protected]). Penumbra are leading a small working group to look at issues relating to the use of scale measures in more detail. For more information on this contact Bridey Monger ([email protected]). 6 Delegates First name Kimberley Nick Karen Nicola Kevin Chris Patricia Jane Ailsa Eleanor Ellen Fidelma Richard Hamish Richard Julie Barbara Trisha Nigel Sara Rikke Kathleen Aileen Anne-Sofie Margaret Anne-Marie Sandra Stuart Ailsa Hugh Ann Rosie Emma Eileen Bridey Philip Greg Victoria Ian Robin Susan Marcia Pam Winona Gordon Andrew Alison Surname Alexander Andrews Barrie Beech Beveridge Bruce Clapham Cluness Cook Cunningham Daly Eggo Fowles Fraser Freeman Gardner Graham Hall Henderson Hitchin Iversholt Kennedy Kenny Laegran Laird MacDonald Mackay Mackenzie McAllister McCann McGuigan McLoughlin Miller Moir Monger Morgan-Klein Muldoon Murray Nicol Paterson Polding-Clyde Ramsay Ramsay Samet Smith Thompson Upton Organisation Scottish Community Care Benchmarking Network City & County of Swansea Healthcare Improvement Scotland Health Intelligence, NHS Grampian East Renfrewshire Council Joint Improvement Team East Renfrewshire Community Health & Care Partnership Shetland Islands Council University of Edinburgh Dept of Health and Social Care, City of Edinburgh Council IRISS Social Work Services, Dumfries and Galloway Council Care Inspectorate Midlothian Council Politics and International Relations VOCAL NHS National Services Scotland Aberlour Child Care Trust Penumbra Communities & Wellbeing, Midlothian Council IRISS Planning and Performance Team, Inverclyde CHCP Community Nursing, Edinburgh Community Health Partnership CHSS Knowledge Exchange Office, UoE Highland Council Alzheimer Scotland North Lanarkshire Housing & Social Work Services Care Inspectorate (Social Care and Social Work Improvement Scotland) Social Work Dept, Dundee City Council Joint Improvement Team Action Group The Richmond Fellowship Scotland VOCAL University of Strathclyde Joint Improvement Team Action Group Penumbra Social Work Performance & Information, Falkirk Council Aberdeenshire Council Turning Point Scotland Social Work Services, Glasgow City Council Moray Council Care Inspectorate (Social Care and Social Work Improvement Scotland) Care Inspectorate (Social Care and Social Work Improvement Scotland) SHSS/Nursing Studies, UoE Joint Improvement Team Action Group Scottish Community Care Benchmarking Network School of Social and Political Science Stirling Council 7