February Outcomes Framework

Transcription

1 February 2018 Outcomes Framework These are working documents that were developed as a resource for design and evaluation of Macmillan s support to Recovery Package implementation, but others are welcome to draw on them. The content is being tested and may be revised over time.

2 The Recovery Package Outcomes Framework and assumptions The Definitions Document describes, in some detail, the components that make up the Recovery Package and how we expect them to work. These comprise of Holistic Needs Assessments (HNAs), Care Planning, Treatment Summaries, Cancer Care Reviews and Health and Wellbeing information and support. These components are expected to be delivered across primary, secondary and community settings not in one setting alone. For example, Treatment Summaries will be carried out within secondary care while Cancer Care Reviews will be coordinated by primary care. HNAs and Care Planning can be implemented in community settings and coordinated by local authorities and other appropriate organisations and institutions. As a result, the key to the successful delivery of the Recovery Package is effective communication and coordination between all settings across the treatment pathway, the people who work in these settings, and people living with cancer. This is therefore a keen focus in the evaluation section of our Measurement Framework. Because it is unlikely that one institution, organisation or network will deliver all the components of the Recovery Package, we have developed expected outcomes for each component. This will make it easier to measure, reflect and learn from the core component(s) that an institution, organisation or network is delivering. However, we also need to understand the expected changes that the whole package is expected to deliver or contribute to across the pathway. The change statements on page 12 and 13 offer a high-level overview of what changes we expect to see, and how and why we expect them to occur. It is worth noting that these statements are imperfect at this point and will be developed further through piloting in See Appendix 2 in the Definitions Document for an overview of the refinement and development of our key evidence outputs. This Outcomes Framework outlines the expected outcomes for: a) the individual, b) professionals (registered and unregistered) in primary, secondary and community settings, and c) the health and social care sector or system. The key assumptions that underpin the effective implementation of outcome delivery are outlined on pages 9, 10 and 11. These can also be considered to be risks if they are not addressed and mitigated in design and continuously monitored during implementation. The Definitions Document, Outcomes Framework, and Measurement Framework have all been designed to inform learning for continual improvement. This is outlined further in the Introductory Note. In the frameworks below indicates that there is some evidence to suggest the Recovery Package delivers those outcomes. 2

3 Outcomes framework for individuals: Towards improved patient experience and health outcomes 1. Self-efficacy and knowledge 2 3 HNAs and Care Planning People identify and talk about issues that are important to them People understand the effect that cancer can have on different aspects of their life People feel more informed about their cancer and what support is available to them People have reduced anxiety and improved emotional wellbeing People s severity of concerns decrease People have opportunities to review own needs and support in addressing them Treatment Summaries People find the Treatment Summaries reassuring People have a better understanding of their treatment, the possible consequences of their treatment, and their planned follow-up care People are not required to remember the details of their treatment People have a formal way of communicating their treatment for practical benefits (e.g., to get travel insurance or to inform employers) Cancer Care Reviews People have greater understanding of the support available People have reduced anxiety and improved emotional wellbeing People have a better understanding of their treatment, and what to look out for regarding possible consequences of treatment and recurrence People understand the effect that cancer can have on different aspects of their life Health and Wellbeing information and support People are more confident in making positive lifestyle change People have a better understanding of their new normal People have reduced anxiety and improved emotional wellbeing People have increased confidence in their ability to participate in their care and feel more in control of their situation People have reduced emotional distress and improved emotional wellbeing People have increased awareness of what side effects, symptoms, and warning signs to look out for in relation to cancer, its treatment, and recurrence People have an increased ability to find the information they need and know where to go to access support 3

4 1 2. Access and reaccess, making connections 3. Outcomes HNAs and Care Planning Treatment Summaries People can access available holistic support when needed People have an increased expectation of having their support and care needs met People have greater confidence in the system to identify and meet their needs People have their side effects and consequences of treatment identified and addressed earlier People are more likely to be proactively followed up in primary care and to understand primary care s role in the ongoing management of their cancer People experience an increase in timely and accurate diagnosis and optimal treatment in primary care after cancer diagnosis and treatment People s changing holistic needs are identified, prioritised, and addressed People s side effects, consequences of cancer, and consequences of treatment are identified and addressed early People feel more in control of their situation Reduced emotional distress / improved emotional wellbeing Cancer Care Reviews Health and Wellbeing information and support People have an increased confidence in primary care s ability to identify and meet their needs People can access available holistic support when needed People feel supported in primary care and feel that their care is personalised and joined-up around them People can identify and talk about issues that are important to them People recognise the side effects of treatment earlier and quicker action can be taken People have an increased ability to take part in social activities and every individual can maximise their level of social functioning People have a greater facility to self-manage when appropriate People have increased confidence to participate in and make decisions about their own care People feel their care is personalised to them and their needs People s rehabilitation is facilitated and achieved more quickly. 4

5 Outcomes framework for those working across the treatment pathway in health and social care: Improved workforce skills and competence in cancer support and care 1. Knowledge, skills and confidence 2 3 HNAs and Care Planning Professionals have an increased understanding of the lives of people living with cancer and can offer better support Professionals have improved awareness and knowledge of services and support within their geographic area The time of health care professionals can be used more efficiently (for ehnas only) Treatment Summaries Within primary care there is a better understanding of the breadth of care needed for someone with cancer after their treatment Within primary care there is increased awareness, confidence, and competencies around caring for people living with cancer The professional carrying out a Cancer Care Review is better informed about a person s treatment Formal confirmation occurs in a more timely manner (before the end of acute treatment) so that primary care can code correctly and be aware of treatment earlier Cancer Care Reviews Health and Wellbeing information and support Within primary care there is a better understanding of the breadth of care needed for someone with cancer after their treatment Within primary care there is increased awareness, confidence, and competencies around caring for people living with cancer Professionals have increased confidence and skills in discussing and identifying the holistic needs of people living with cancer Professionals have improved awareness and knowledge of services and support within their geographic area Professionals have improved awareness and knowledge of services and support within their geographic area Professionals are more confident in meeting identified patient needs, outside of their own expertise through signposting Professionals have a better appreciation of the long-term impact that cancer can have on people and their families 5

6 1 2. Job satisfaction and delivering quality care 3. Outcomes HNAs and Care Planning Treatment Summaries Cancer Care Reviews Health and Wellbeing information and support Professionals have increased job satisfaction and validation through addressing the right patients needs New roles are created or existing roles are expanded for support and delivery People are moved back from secondary care specialists to primary care more safely There is a decrease in duplication of work due to improved planning and coordination There is increased satisfaction through improved care delivery (e.g., picking up recurrence and addressing the consequences of treatment more quickly) Primary care is supported to take on a person s post-treatment related needs more quickly Professionals experience increased job satisfaction Secondary care professionals are reassured that people will be looked after outside of their care and they know non-acute services are available for meeting the needs of people There is increased buy-in from professionals for self-managed follow-up through interactions with people living with cancer There are improved skills and competencies around caring for people living with cancer Professionals have an increased understanding of the lives of people living with cancer and can offer better support There is increased awareness and confidence around providing care for people living with cancer and identifying and discussing their holistic needs There is increased satisfaction through improved care delivery (e.g., picking up recurrence and addressing the consequences of treatment more quickly) 6

7 Outcomes for the system: Improved effectiveness and efficiency 1. Coordination and communication across settings 2 3 HNAs and Care Planning There is improved awareness and knowledge of the services and support available across sectors There is improved coordination across the system There is improved communication across the system There is improved communication between the system, people living with cancer and their carers Treatment Summaries All potential care providers are aware of a person s treatment regime, subsequent consequences, and likely needs Better medicine management in primary care is supported There is improved communication across care settings There is improved communication between the system, people living with cancer and their carers There is improved coordination and understanding across the system (especially within primary and secondary settings) Cancer Care Reviews There is improved coordination between primary, secondary and community care There is improved communication across the system There is improved communication between the system, people living with cancer and their carers Health and Wellbeing information and support There is better coordination of health and social care with the third sector through partnership working 7

8 1 2. Efficiency and effectiveness 3. Outcomes HNAs and Care Planning Treatment Summaries There is a reduction in unplanned service use across settings, e.g., emergency presentations, GP appointments, and hospital admissions Quicker and more collaborative innovation in services to fill gaps is facilitated More efficient use of appointments (predictive) and GP time is facilitated Unnecessary returns to secondary care and unnecessary contacts with social care are avoided The effective call and re-call for follow-up monitoring is supported There is improved communication across the system There is improved communication between the system, people living with cancer and their carers There is improved coordination across the system There is a reduction in inappropriate or unnecessary appointments Cancer Care Reviews Health and Wellbeing information and support There is a reduction in inappropriate or unnecessary service referrals and use There is a reduction in unplanned service use across settings, e.g., emergency presentations, GP appointments, and hospital admissions Better medicine management is supported There is an increased provision and better sustainability of all types of community services (e.g., practical and financial) due to increasing demand There is a reduction in inappropriate or unnecessary service referrals and use There is a reduction in unplanned service use across settings, e.g., emergency presentations, GP appointments, hospital admissions There is a reduction in unplanned admissions There is improved awareness and knowledge of services and support available across sectors There is increased cross-sector identification of service gaps and unmet needs through improved coordination and information sharing 8

9 Context and key assumptions for effective implementation It is good practice in evaluation to articulate the key assumptions about how interventions will achieve outcomes as part of a monitoring, evaluation and learning (MEL) plan. These assumptions should then be thoroughly tested. Below are some key assumptions that underpin the delivery and contribution to the above outcomes. An example of how to use the Outcomes Framework, and the underlying assumptions for local design and planning, can be seen in Appendix 1. The assumptions listed here are not exhaustive and local teams will also be able to articulate assumptions that are much more specific to their context. The important thing to recognise is that assumptions about implementation in any context and setting should always be considered in design and strategies, and plans should be made to address them. This is particularly important for those assumptions that are high risk to effective implementation. High risk assumptions should also be monitored closely through Measurement Frameworks and Evaluation Plans. For example, if some of the assumptions in this section do not hold true, e.g., if professionals do not know the most appropriate services to refer to, then there is a risk that people s expectations will be raised but they will be unable to access the right information and support. This would be a negative outcome. Another example is that if services do not have the capacity to support those who are referred to them, then this might place increased stress on partnerships within a region or setting. Additionally, if professionals have insufficient time allocated for facilitating and supporting HNAs and Care Planning, then they may experience burnout, stress, and job dissatisfaction. This, in turn, could lead to high levels of staff turnover, sickness absence and early retirements and would be another negative outcome. Common assumptions to consider, plan for and monitor For HNAs and Care Planning 1) It is more likely that outcomes will be delivered if the relevant professionals involved in a person s care: see the value of coordinating and facilitating HNAs and care plans, have the time, capacity and the skills to coordinate and facilitate good quality HNAs and care plans, know the relevant services, organisations and networks to refer to, record the HNAs in the form of a care plan, which outlines actions clearly and coherently, and communicate the benefits of the HNA and Care Planning effectively and at the most appropriate time for the person diagnosed with cancer. 9

10 2) It is more likely that outcomes will be delivered if the person living with cancer: sees the value of HNAs and Care Planning, wants to have the care plan developed and accepts it after it has been written, accepts referrals, follows signposts and navigation, undertakes persondesignated actions and chooses to use the services that they are signposted and referred to, is able to access the services (e.g., they are in within a reasonable distance and they can afford the travel costs), and has the ability to self-manage. 3) It is more likely that outcomes will be delivered if, in the wider context: services exist to meet the identified holistic needs and they have the necessary capacity, there is up-to-date information available about local services to those people facilitating HNAs and care plans, care plans are being shared (i.e., there is good coordination and communication on care plans in and across settings), and care plans can be shared (i.e., there is the digital infrastructure, in and between settings, to share care plans). For Treatment Summaries 1) It is more likely that outcomes will be delivered if the relevant professionals in primary care: understand the content of the Treatment Summary, agree with the actions (i.e., they consider them to be appropriate for the patient and their history), follow up on the required actions in the care plan, record and appropriately code the relevant information in the GP system, ensure the Treatment Summary receives a GP review regardless of whether there is a need to take direct action, and can access the Treatment Summary whenever is appropriate and relevant. 2) It is more likely that outcomes will be delivered if the relevant professionals in secondary care: produce the Treatment Summary or equivalent in a timely manner, and provide clear and comprehensive information to inform primary care. 3) It is more likely that outcomes will be delivered if the person living with cancer: understands the purpose of the Treatment Summary and wants a copy of it when offered. 10

11 4) It is more likely that outcomes will be delivered if, in the wider context: it is common practice to have a conversation about the Treatment Summary with professionals in secondary and primary care, and primary and secondary care professionals offer to talk through the Treatment Summary in a way that the person living with cancer understands. For Cancer Care Reviews Many of the assumptions for the Cancer Care Reviews are the same as those for the HNAs and Care Planning, so please refer to those assumptions above. Additional assumptions specific to the Cancer Care Review may include that it is more likely that the outcomes will be delivered if: the Treatment Summary was sent, received and understood by the GP and other relevant primary care professionals, and As Health and Wellbeing is a common thread that is delivered across the pathway, many of the same assumptions apply. Assumptions directly related to Health and Wellbeing Events may include: 1) It is more likely that outcomes will be delivered if the relevant professionals involved in the person s care: know about such events and know how to signpost and refer, and see the value of these events and encourage their patients to attend them. 2) It is more likely that outcomes will be delivered if people living with cancer: can access and travel to events, and see the value of peer-to-peer support. the Treatment Summary is discussed with and understood by the person living with cancer. 11

12 Recovery Package change statements As mentioned earlier in this document, these change statements represent the beginning of the overall articulation of how the Recovery Package works for individuals, professionals and the health and social care system. As we learn from gathering the correct information we will refine and re-develop these statements. For the individual better able to self-manage, improved selfefficacy, knowledge and confidence, experience and personalised care If people s changing holistic needs are identified and addressed at the most appropriate times across the treatment pathway, then people will be more prepared to manage their own rehabilitation, or aspects of it. Providing people with the right information, support and care at the right time will help prevent their needs and issues from reaching crisis point (depending on the type and stage of cancer and their life situation). For people diagnosed with cancer and deemed to be at end of life, identifying and addressing these needs will support them to live the best life they can during the time they have. All people, no matter what stage or type of cancer they have, will receive the best experience possible given their individual situation. This is because person-centred care and support addresses a wide range of needs (including emotional, physical, practical, financial and clinical needs) and supports self-efficacy, knowledge and confidence to self-manage aspects of an individual s rehabilitation and/or care to the extent which is appropriate for them. For the individual accessing and re-accessing the system, making connections and developing supportive relationships If people know where, when and how to access the right kind of information and support across the treatment pathway, then they will access and reaccess the system at the times that are most appropriate for them. This would also allow them to develop supportive relationships and connections across the pathway. This is because people will have knowledge about what they can expect from the system and they will trust that the different settings can provide the right kind of information, support and care to meet their changing needs. For those working across primary, secondary and community settings increased skills, knowledge and confidence to support people living with cancer If those working across primary, secondary and community settings are supported to develop their knowledge, skills and competencies to understand and support the needs of people living with cancer, then they will experience increased job satisfaction in their roles as they shape and deliver improved care. This is because professionals will develop confidence to support people to make the right decisions with people across the treatment pathway. 12

13 For the system decreased use of unplanned appointments, more efficient use of resources, and new opportunities for care and support If we promote better communication and coordination across primary, secondary and community settings and better communicate what people living with cancer can expect from these settings then we will prevent the unnecessary use of health and social care resources. We will also be able to utilise existing resources more efficiently and find new opportunities to provide care and support. This is because the system will make it straightforward and easy for people to access and re-access relevant information and support to address their holistic needs at the right times for them. 13

14 Appendix 1 Excerpt from Outcomes Framework A team may think some of these outcomes are appropriate in their context. 1. Self-efficacy and knowledge People identify and talk about issues that are important to them People understand the effect that cancer can have on different aspects of their life People feel more informed about their cancer and what support is available to them People have reduced anxiety and improved emotional wellbeing People s severity of concerns decrease 2. Access and reaccess, making connections People can access available holistic support when needed People have an increased expectation of having their support and care needs met People have greater confidence in the system to identify and meet their needs 3. Outcomes People s changing holistic needs are identified, prioritised, and addressed People s side effects, consequences of cancer, and consequences of treatment are identified and addressed early People feel more in control of their situation 14

15 Example of how we think HNAs and Care Planning works to deliver outcomes in context. People s severity of concerns decrease (Evidence) People have reduced anxiety and improved emotional wellbeing (Evidence) Use the Outcomes Framework and the key assumptions to design local interventions of how and why change happens in context. The evaluation framework should then test assumptions and outcome. Note this is only a guide and context specific outcomes and assumptions will need to be developed by local teams. People receive personalised care and improved experience People s changing holistic needs are identified and addressed People can access holistic support when needed if services are accessible (distance, cost etc.) if people choose to use the services if service providers have capacity if the services are quality if holistic support is available in localities Key: Changes people living with cancer (outcomes) Assumptions People have greater understanding of support available (Evidence) People identify and talk about issues that are important to them (Evidence) HNAs and Care Planning (see Definitions Document) 15

16 You may have cancer, but you are still you. Macmillan is here to help you live life no matter what. We ll give you the support you need to hold on to who you are and what s important to you. From the moment you re diagnosed, for as long as you need us, you can lean on Macmillan. Call us free on or visit macmillan.org.uk Life with cancer is still life we ll help you live it. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. February 2018.