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Supporting Older People to Use and Interpret Equality Data in Health and Social Care A City for All Ages Advisory Group, Edinburgh Project Summary The Improvement Service, the Equality and Human Rights Commission and Scottish Government worked in partnership to deliver the action research project, Improving Local Equality Data (ILED), over twelve months from February 2011. The project provided hands-on, tailored support to four local authorities / Community Planning Partnerships to develop and use the equality evidence base to measure progress towards equality within the outcomes approach. Each local project team selected areas for support based on their unique priorities and circumstances. The Edinburgh Partnership, through some of its constituent sub-groups, is working on three initiatives to help improve local equality data and information for use within their outcomes approach. This will support relevant organisations within the Partnership to fulfil the Public Sector Equality Duty specific duties. . The Duty consists of a general equality duty in the Equality Act 2010, and specific duties designed to enable the better performance of the general duty. New specific duties are expected to come into force in Scotland in May 2012. One of these duties will require public authorities to publish a set of equality outcomes by April 2013 and report on progress towards these outcomes at least every two years. This paper provides details of one of the initiatives the Edinburgh Partnership is undertaking – supporting older people to use and interpret health and social care data. The Partnership is doing this by involving the A City for All Ages (ACFAA) Advisory Group in exploring the collection and dissemination of equality data related to older people’s services within Health and Social Care. This work existed independently of the ILED project and the ILED project management team’s involvement in the work was minimal. However the ILED project management team felt it would be useful to capture some of the early findings of this work to support others who may want to take a similar approach. The ACFAA Advisory Group includes individual older volunteers and representatives from older people’s groups and organisations. Since 2001, it has worked with the City of Edinburgh Council and partner organisations in the NHS, voluntary and independent sectors to help develop and shape plans and services for older people. ACFAA focuses on improving opportunities and 1 services for older people in Edinburgh, removing discrimination and challenging attitudes about older people. This paper describes the views of older people (as represented by the ACFAA Advisory Group) regarding data collection and equality data. Specifically, how data collection and equality data can be better understood by the public and relevant to their experiences. Strengths of the Approach The project is midway through its development. The main strengths of the project to date are detailed below. Working with service users to understand what information matters to them and why. In the context of these meetings, the initial focus was on health and social care performance information, but discussions touched on other areas relative to wellbeing that were important for older people, but more complex to measure, such as social and volunteering activities. The Advisory Group focussed on health and social care data because it exists as a singular data set; because the Edinburgh Joint Older People’s Management Group uses it; and because it was known to contain little specific information by protected characteristic.1 Making best use of the skills of retired professionals, who are keen to stay involved with community work Involving key members of council staff – for example, Health and Social Care research manager - to improve the opportunity for real change as a result of these discussions. What We Did ACFAA has recently undergone a ten-year evaluation. A key recommendation from the evaluation is that the work undertaken so far should be mainstreamed into wider council policy. As part of this process, the Advisory Group may look at areas that can contribute to develop indicators to measure older people’s levels of health, care and wellbeing. The ACFAA Strategy Manager arranged two meetings to explore what was important to older people, in terms of health and wellbeing, as part of the scoping phase of the indicator development project. The ILED project management team supported discussions in one of these meetings. Staff from the Council with an equality and / or health and social care remit were also invited to participate in the meetings. Initially, the ACFAA Advisory Group used the domains in the Equality Measurement Framework (EMF) to support their discussion of what was 1 Under the relevant legislation the protected characteristics are defined as: age; disability; gender reassignment; pregnancy and maternity; race; religion and belief; sex and sexual orientation 2 important to them in their lives.2 The group were also shown extracts of health and social care performance data.3 Together, this information helped the group to have a discussion about what issues mattered to them, and the extent to which existing performance measures captured this. Importantly, the discussion helped to explore what was missing from health and social care data that was important to older people, as well as other issues that were important to older people that were not just about health and care. In a general discussion about what might be important areas to be able to measure, members of the ACFAA Advisory Group raised the issues detailed below. Access to Services How can we find out how well older people can access day care services? Measuring the impact of welfare reform on older people Care Needs The need for care is often unpredictable and potentially on an ad-hoc basis – how is this reflected in data? How can we reflect the needs of older people at different stages of their lives? The needs of someone 50+ may be very different from those aged 85+ What’s missing from the information? How do the Council and partners such as NHS share data? How can we capture other things that are important to older people, such as volunteering? Mental health issues are missing Information on dental health and podiatry are also missing; podiatry in particular was expressed as being important to older people. Following the initial meeting, a further meeting was held, with input from the ILED project management team, in which participants drilled down further into the technical aspects of data and data collection. To support discussions within the meeting, more data sets published by the Council’s Health and Social Care department were circulated for information. The data captured within these reports was performance related and aimed at health and social care professionals, as opposed to being public performance 2 For more information about the EMF, please see the EMF Briefing Paper, available at: http://www.equalityhumanrights.com/uploaded_files//emf/briefing_note.pdf 3 The group were shown data from the Older Persons Management Group Performance Report, which includes performance information under headings including Domiciliary Care, Falls, Care Home Placements, Respite, Audio logy, Direct Payments, Delayed Discharge and Balance of Care. 3 reporting.4 The group was also reminded of several other sources of local level information available within the Council / CPP, including the Edinburgh People Survey and the Edinburgh Area Profiles, published by other parts of the Council. It became clear throughout the course of the meeting that, for the older people present, the most important issues were: Presenting information clearly Prevention – certainly in the context of health and social care. It is difficult for service users, as key stakeholders, to make judgements about what data is saying if it is not presented in a way that is understandable. For example, information that is provided numerically in a list or in tables, without a narrative or context, is incredibly difficult to understand and relate to people’s own experiences. Hospital admission statistics and other health and social care performance data was not the most critical thing for the older people involved in this meeting. What mattered was making sure that older people could access services that would help them to avoid needing to go to hospital and require care services. Attendees provided a lot of anecdotal examples of their peers not knowing that services existed and not being to access them if they did know, for example because of communication support needs. It is worth noting that the involvement of older people themselves was an important way of building the evidence base regarding health and social care. By discussing issues with older people, it was possible to highlight some examples of areas that were important to older people, which would not be captured through quantitative performance data. A general discussion on equality monitoring data also raised the following questions from participants at the meeting: What information do older people want and for what purpose? What do you need to know and why do you need to know? For what purpose do you want to use the data? Is the data relevant to how a service is delivered? What does the Council need to know? Is there a difference in what managers and others need to know? Is it appropriate and / or possible to collect? What exactly are the questions you want asked? At what point is data aggregated and available? After the meeting, the ILED project management team provided a variety of documents / practice, to address some of the issues raised within the 4 The data set used was the Older Persons Management Group Performance Report 4 meeting. These included examples of data visualisation; summary of the Joseph Rowntree Foundation report 'A Better Life - what older people with high support needs value'; and examples of work undertaken by Fife Council, which had previously worked with older people to identify what mattered to them in terms of service provision. What Impact the Project had Health and Social Care and Workforce Planning and Development services are now looking at training issues for staff around the collection of data; identifying what the purpose of collecting data is; improving the approach to collecting data; and where it is appropriate to record information. This is primarily taking the form of improving the use of the client information system SWIFT, which is used to record and share information about the individuals who are supported by Community Care, Children and Families and Criminal Justice Services. The Health and Social Care service within the Council will consider alternative forms of presentation as part of their public performance reporting. Ongoing work to improve the quality of data in the council. This will include reports for team managers, highlighting where the information is missing, and what needs to be done to improve it. Issues or Challenges Recognising the purpose of collecting equality monitoring information in the context of health and social care issues. It is important that both staff and service users understand why services collect equality monitoring information, and how it is used it to inform service delivery and improve outcomes. For example, one member of the ACFAA Advisory Group questioned whether it was important to collect equality monitoring information when being treated in a hospital Accident and Emergency department. Unless both services and service users understand the purpose of collecting information, the task can be met with confusion and reluctance. Identifying how to measure more complex issues that are important to older people. For example, how can the impact of volunteering upon older people’s sense of being social and active in the community be measured? This could require a degree of combining statistical and qualitative data together to understand complex issues. This is an important point. It is essential to understand what is important (and why), and then figure out the best way to measure it; rather than producing data without a clear purpose. Presenting data in a way that is clear and useful for service users to understand. Lessons Learned A recurring theme within discussions among the ACFAA Advisory Group was that the most important issue was ensuring that older 5 people could access services. This was seen as a key point for improving outcomes for older people. To fully engage older people in developing and using services, information about those services must be presented in an accessible way. Older people, families and carers want information about what services are available and where they can go for more information about different services. Current sources of information include Get up and Go brochure5; Edinburgh Libraries, Age Scotland Helpline; Social Care Direct, and other information provided by the Council in all Council offices. At the Advisory Group meeting in January 2012, members provided suggestions to Libraries staff dealing with Get up and Go on how to improve information to older people. They suggested providing telephone and postal contact details on the brochure; having an insert within the brochure that provides contact numbers for key activities at a glance; and wider distribution of the brochure, for example in churches and GP surgeries. Libraries staff will include contact details in the next brochure, and consult the design team regarding including an extra pull out with information. Libraries staff also explained that the brochure is distributed widely,6 including to all GP surgeries, and that information from churches in Edinburgh is only distributed by email. It was suggested that the performance data within the Older Persons Management Group Performance Report could be presented in a different way with more narrative to describe trends / background information etc. and that this would be more useful to older people. There are many things that are important to older people, which are currently not captured in health and social care performance data. Some examples relating to health and social care include mental health issues, dental care and podiatry, and ad-hoc care needs, including different needs at different stages of old age. Some examples were not directly about health and social care but were still important to older people, for example, volunteering. Since the meeting, it was found that this information is held elsewhere, much of it by the Information Service Division (ISD) within the NHS. The Edinburgh Volunteer Centre also holds information, but this does not give a true picture of the actual number of volunteers in the city. Further Information Glenda Watt: [email protected] Nick Croft: [email protected] 5 Brochure that gives information about activities and support for older people in Edinburgh. 40,000 copies are printed every year and currently only 2,000 remain. 5 copies are given to all Edinburgh GPs and Dental Surgeries and some order more throughout the year. 10,000 copies go to the Edinburgh bus station. Other outlets are libraries, community centres, Physiotherapy Departments, Rehabilitation Centres, care homes, sheltered housing etc 6 6