National Advance Care Planning Prevalence Study Application Guidelines July 2017 Decision Assist: an Australian Government initiative. Austin Health is the lead site for Decision Assist.
TABLE OF CONTENTS Definitions 3 Acronyms 4 1. Introduction and Overview 5 1.1 Introduction 5 1.2 Overview 5 1.3 Who can apply? 6 1.4 Key dates 6 2. Objectives and scope 6 2.1 Study aims 6 2.2 Scope 6 3. Eligibility criteria 7 4. Support and responsibilities 7 4.1 Organisational 7 4.2 Individual support 8 4.3 Responsibilities of organisations 8 4.4 Funding to support this study 8 5. Project methodology 9 6. Project ethics and governance 9 6.1 Research collaboration agreement 9 6.2 Ethics approval 9 6.3 Site-specific assessment 9 7. Assessment criteria 10 8. How to submit an application 11 8.1 Application form 11 8.2 Timeline for applications 11 8.3 Privacy and confidentiality 11 9. Assessment process 11 9.1 Appraisal 11 9.2 Notification 11 10. Further information 11 National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 2 of 11
DEFINITIONS Term Advance care planning Advance care planning prevalence Documentation of advance care planning Health record/file General practice Hospital Jurisdiction Organisation Person Person-centred care Residential aged care home Study coordinator Study protocol Description Advance care planning is a coordinated communication process between a person, their family/ carer and health care providers that aims to clarify the person s values, treatment preferences and goals of medical treatment should the person lose capacity to make or communicate such decisions in the future. Terms for advance care planning differ in each state/territory (jurisdiction). Successful applicants will receive a list of terms that name advance care planning within their jurisdiction. The proportion of a study population that has advance care planning documentation at the time of the study. This study will look for documented evidence in a health record/file that reflects a person s values, preferences for care and decision-making. Evidence of advance care planning may be recorded by staff in the health record/file. These records may also contain documented advance care planning provided by the person. A comprehensive compilation of information traditionally placed in the medical record, but also covering aspects of the person s physical, mental, and social health that do not necessarily relate directly to the condition under treatment. Also referred to as records, files, case notes, electronic health records, medical records, patient file, client file, care plan. General practice provides person-centred, continuing, comprehensive and coordinated whole person health care to individuals and families in their communities. A health-care facility established under Commonwealth, state or territory legislation as a hospital or a free-standing day procedure unit and authorised to provide treatment and/or care to patients. Refers to a state or territory within Australia. An entity comprising multiple people. In this context, it refers to a residential aged care home, general practice and hospital. Refers to consumers of services provided by residential aged care homes, general practice, and hospitals. Used interchangeably with resident, patients and clients. Care in which the person has a say in the decision-making process when planning care and treatment. Also referred to as person/patient-centred practice and whole person care. Provides care within a supported accommodation setting for those whose care needs can no longer be met within their own homes. Also known as a residential aged care facility. A staff member of the residential aged care home, general practice or hospital who has been allocated to complete the research project, including conducting the file review and patient survey and has received training to conduct the study. Study design and methodology approved by Austin Health Office for Research. Contains details about how the study will be implemented. This includes the data collection and survey tools. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 3 of 11
ACRONYMS Abbreviation ACD ACPA ACP GP NMA SSA Description Advance Care Directives Advance Care Planning Australia Advance care planning General Practitioner National Mutual Acceptance Site-specific Assessment National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 4 of 11
1. INTRODUCTION AND OVERVIEW 1.1 INTRODUCTION Advance Care Planning Australia (ACPA) and Monash University are calling for expressions of interest from hospitals, general practices and residential aged care homes in Australia to participate in the Advance Care Planning Prevalence Study. This document will assist organisations in lodging an application to participate in the study. 1.2 OVERVIEW This world-first pilot study will look at the prevalence of documentation within hospitals, general practices and residential aged care homes. This research is funded by the Australian Government through the Decision Assist program: http://www.decisionassist.org.au Australia s population is ageing and the need for complex health care will rise accordingly. As our community ages and experiences multiple health issues, it becomes increasingly important to provide care in line with a person s wishes. The National Palliative Care Strategy 2010, A National Framework for Advance Care Directives 2011, and the Evaluation of the National Palliative Care Strategy 2010 Final Report all emphasise the importance of advance care planning in enhancing national palliative care. Advanced illness or serious injury can sometimes mean that people are unable to make decisions about their care. This can happen to people of all ages, and especially towards end of life. It is important that organisations such as hospitals, residential aged care homes general practices understand how a person wants to be cared for at this time. Advance care planning gives people the opportunity to clearly state their preferences for care in case they are unable to speak for themselves. Clear documentation of these plans can help family and staff make decisions on a person s behalf. Missing or inaccurate documentation in an organisation s record/files may mean that these plans are not carried out. The Evaluation of the National Palliative Care Strategy 2010 Final Report (Urbis, 2016) identified a lack of baseline advance care planning data and the need for national data to monitor the effectiveness of the strategy including uptake of advance care planning. A recent review of the literature indicated that Australia lacks baseline evidence about the prevalence of advance care planning documentation across sectors. High quality advance care planning data from hospitals general practices and residential aged care homes, across Australia will be collected as part of this research. Decision Assist was funded by the Australian Government under the Living Longer, Living Better aged care reform package to improve the provision of palliative care and advance care planning advisory services. Advance Care Planning Australia (ACPA), based at Austin Health, is the lead agency for this program of work. The primary objectives of the Decision Assist program are to: 1. Provide specialist palliative care and advance care planning advice to aged care providers and GPs caring for recipients of aged care services in all states and territories 2. Improve linkages between aged care services and palliative care services 3. Improve palliative care skills and advance care planning expertise of aged care service staff and GPs caring for recipients of aged care services 4. Improve the quality of care for aged care recipients, prevent unnecessary hospital admissions and shorten hospital length of stays. Advance Care Planning Australia in partnership with Monash University will undertake a national study to assess the prevalence of ACP documentation in hospitals, general practices and residential aged care homes. The data collected as part of this study will assist organisations and government understand how well advance care planning is implemented, and identify areas for improvement. Participating organisations will only receive their data. All other data will be de-identified, aggregated and reported to the Australian Government Department of Health. The Advance Care Planning Prevalence Study is funded by the Australian Government to 31 December 2017. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 5 of 11
1.3 WHO CAN APPLY? Applications are open to all public, private, accredited hospitals, residential aged care facilities and general practices. 1.4 KEY DATES Activity Date of completion Opening date for applications 10 July 2017 Closing date for applications 27 July 2017 All sites advised of outcome 14 August 2017 Data collection commences September/October 2017 2. OBJECTIVES AND SCOPE 2.1 STUDY AIMS The aim of this project is to assess the prevalence of readily accessible documentation of advance care planning for those over 65 years in Australian hospitals, general practice and aged care homes. The study aims to: 1. Determine the prevalence of advance care planning documentation in paper or electronic health record of persons over 65 in hospitals, general practices and aged care homes. 2. Assess the quality, validity and variation of the advance care planning documentation across different organisations and jurisdictions in Australia. 3. Explore person s views on advance care planning. 4. Explore whether care plans developed for the person are consistent with documented patient-driven preferences for care, including medical treatment. 2.2 SCOPE A total of 48 Australian organisations will be selected to participate in the study via an application process. Two hospitals, two general practices and two residential aged care homes will be selected from each state and territory. The records/files of approximately 2,400 people will be reviewed. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 6 of 11
3. ELIGIBILITY CRITERIA Each participating site must: n Have the approval and endorsement of their executive team. n Be an accredited organisation according to the sector requirements. n Must have access to IT and devices for online data collection (e.g., computer, laptop or ipad). n Must have internet, email and telephone access. n Have a patient/client management system with the ability to extract the list of all admissions of persons 65 years or more admitted to hospital or aged care home for more than 48 hours on the day of the study. n Have the capacity to review a minimum of 50 health/records and administer a minimum of 50 surveys in the nominated time period. n Have study coordinator(s) with the capacity to undertake up to three hours online training. n Have appropriately skilled clinical staff available to assess a person s decision making capacity. n Have appropriately skilled staff who are available to answer questions about advance care planning. n Have policies in place about privacy and confidentiality. n Be willing to accept retrospective payment for involvement in this study, following the receipt of a tax invoice. n Be willing to sign a research collaboration agreement, and where necessary a site-specific assessment within four weeks of commencement of the project. The following are NOT eligible to apply: n Individuals n Organisations with less than 30 residents/clients n Overseas organisations. 4. SUPPORT AND RESPONSIBILITIES 4.1 ORGANISATIONAL This project will appeal to organisations who are interested in contributing to ground breaking research. Advance Care Planning Australia and Monash University will provide organisational and financial support to each participating site. Organisations will benefit from: n The assistance of researchers to determine how well they are recording a person s preferences for care. n Opportunities to find out how they can improve person-centred care. n The opportunity to use this well designed study as part of quality improvement and accreditation standards such as Aged Care Accreditation Standards 1-4, National Safety and Quality Health Service Standards and Royal Australian College of General Practitioners Standards for General Practices 4th edition. n The support of the National Advance Care Planning Prevalence Study Advisory Group to oversee the study and provide advice where required. n Funding to support participation in the study. A total of $100 per reviewed file and survey administered will be paid to each site. n Recognition of health services contribution. n A package of electronic and hard copy information, including a telephone advisory line. This will be provided to ensure information is available to all staff members should questions on advance care planning arise during or after the project. n Assurance that this study will be conducted in compliance with all stipulation of this protocol, the conditions of the ethics committee approval with the National Health and Medical Research Council s National Statement on Ethical Conduct in Human Research, 2007, and the Note for Guidance on Good Clinical Practice (CPMP/ICH-135/95). National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 7 of 11
4.2 INDIVIDUAL SUPPORT Study coordinator(s) involved in the data collection activities will benefit from: n Two webinar training sessions of 90-minute duration in data collection. n Support of project leads at participating sites. n Regular communication from the research team. n A training manual to supplement the training program. A data collection tool and survey have been developed to collect and record information. Organisations are encouraged to nominate up to three study coordinators to receive training on collecting the data and conducting the surveys. n Advance Care Planning Australia and Monash University staff will be available via telephone and email for consultation throughout the project. n Continuing professional development points, where applicable. 4.3 RESPONSIBILITIES OF ORGANISATIONS Involvement in this world first research project requires commitment from all participating sites. This involves: n Senior executive approval and support for the study with authority to sign a research collaboration agreement, and, where necessary, a site-specific assessment. n Establishing a governance committee to oversee the project or accessing an existing governance structure to support the project such as a Quality and Safety Committee. n Ensure the site studies are conducted in compliance with all stipulations of the study protocol, the conditions of the ethics committee approval with the NHMRC National Statement on ethical Conduct in Human Research (2007) and the Note for Guidance on Good Clinical Practice (CPMP/ICH-135/95). n Have access to at least 50 health records/files that are likely to meet the inclusion criteria. n Be able to provide resources to ensure completion of the project in the allocated timeframe. n Having access to computers and/or tablets with a reliable internet connection to streamline data collection activities. n Ensure email and/or telephone access is available to staff. n Allowing internet access to the unique cloud-based data repository tool. n Provision of a copy or site specific advance care planning organisational policies to the research team (not mandatory). 4.4 FUNDING TO SUPPORT THIS STUDY A total of $100 per reviewed record/file and survey administered will be paid to each site following the receipt of a tax invoice. It is expected that there will be a target of 50 (maximum) and a minimum of 30 completed record/file reviews and surveys returned. A maximum payment of $5,000 for 50 completed record/file reviews and surveys, pro rata at $100 per person for less than that, with a minimum number of completed record/file reviews and surveys in order to obtain funding being 30. This payment includes the cost associated with study coordinator(s) attendance at webinar training. Where applicable, the cost for the ethics application will be reimbursed on prior written approval by Austin Health and a valid payment receipt. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 8 of 11
5. PROJECT METHODOLOGY This study consists of two components: Part 1: Review of individual health records/files looking for specific advance care planning documentation Organisations will review between target of 50 (maximum) and a minimum of 30 individual health records/files for people who are present in the health service on a nominated date. Information to be collected includes demographic characteristics, some general clinical information, advance care planning documentation and preferences for care. Study coordinator(s) responsible for reviewing health records/files will have experience in retrieving information from health records/files. This could be someone who has experience in providing care and/or extracting data. They will be able to find the required information, collate data using a collection tool, and enter the data into a database. It will take up to 30 minutes to review and extract the data from each record/file, and 30 minutes to administer the survey. Part 2: A short survey of people whose health records/files have been reviewed People whose records/files were reviewed will be invited by the study coordinator(s) to participate in a short survey about their knowledge and experience of advance care planning, and existence of advance care planning documentation. An appropriately skilled clinical staff member will be available to assess whether a person is suitable to complete the survey including assessing a person s decision making capacity if needed. In some cases, a study coordinator(s) may need to assist people with completing the survey. If people require further information, relevant information resources can be provided or they can be referred to their health care team. The survey will take approximately 20 minutes to complete. 6. PROJECT ETHICS AND GOVERNANCE Advance Care Planning Australia and Monash University will support successful organisations to gain appropriate ethics and governance approvals to conduct the study at their site. 6.1 RESEARCH COLLABORATION AGREEMENT All successful organisations will be required to sign a Research Collaboration Agreement with Austin Health, which outlines the terms and conditions in order to conduct the study at their site. A copy of this agreement can be found for reference on the following website: http://bit.ly/daprevstudy. 6.2 ETHICS APPROVAL Austin Health has an NHMRC certified Human Research Ethics Committee which has granted ethics approval to conduct this prevalence study under the National Mutual Acceptance agreement (NMA). The NMA agreement provides single ethical review for multi-centre research projects for public health organisations in the participating states of Victoria, New South Wales, Australian Capital Territory, South Australia and Queensland. Other organisations in these states, such as aged care homes and general practices can also chose to accept this ethics approval. Western Australia, Northern Territory and Tasmania are not part of the NMA agreement. Advance Care Planning Australia and Monash University will support these jurisdictions to gain ethics approval to conduct the study once successful organisations are confirmed. 6.3 SITE-SPECIFIC ASSESSMENT Public health organisations will also be required to submit a site-specific assessment (SSA) of the study to their own research governance department to confirm local capacity and capability to conduct the project. Other organisations will need to check any site-specific assessment requirements with their local research governance departments or organisation. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 9 of 11
7. ASSESSMENT CRITERIA Participating organisations will be selected to ensure that there is adequate exploration of advance care planning documentation across a variety of organisations within Australia. Applications will be assessed by the research team against the following criteria for their ability to conduct the data collection: Item Criteria Qualify to participate Meets the definition of a: n hospital n residential aged care home, or n general practice within Australia. Ability to provide leadership to project team within the organisation Staff are available to implement the project Clinical staff are available to support the project Other resources are available to implement the project Operational Experienced personnel (e.g., research, advance care planning, quality and safety) available to lead the project. Approval from senior personnel to participate in the study. Staff (study coordinators) are able to undertake up to three hours online training prior to implementation. Staff (study coordinators) are available to complete the data collection. An appropriately skilled clinical staff member is available to advise whether a person has the capacity to make decisions. An appropriately skilled clinical staff member is available to answer questions about advance care planning from people during or after survey completion. Internet access is available. Equipment is available for collecting data (computer or tablet). Email and telephone access is available for study coordinator(s). The organisation is able to accept retrospective payment. Organisational policies are in place to protect people s privacy and confidentiality. The organisation is willing to sign a research collaboration agreement. Where applicable, to gain site-specific ethics/governance approval within four weeks of commencement of the project. National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 10 of 11
8. HOW TO SUBMIT AN APPLICATION 8.1 APPLICATION FORM All applications must be submitted online: https://www.surveymonkey.com/r/daprevstudy. For reference purposes, a hard copy of the application form can be found here http://bit.ly/daprevstudy. Please note you will be required to complete the certification section separately and this signed document will need to be uploaded into the online application. Faxed, hard copy, late or incomplete applications will not be accepted. Acknowledgment of receipt of each application will be forwarded within one business day of the application submission. 8.2 TIMELINE FOR APPLICATIONS See Section 1.4 8.3 PRIVACY AND CONFIDENTIALITY To maintain confidentiality of personal information, only staff employed by the organisation and directly involved in collection of data will access health records/files. Data will be handled, stored and disposed of according to the National Health Medical Research Councils s National Statement on Ethical Conduct in Human Research, 2007. 9. ASSESSMENT PROCESS 9.1 APPRAISAL Upon closure of the application period the project team will review all applications for completeness and to ensure the mandatory requirements set out in the guidelines have been met. A panel comprising experts from hospitals, general practice and the residential aged care sectors will assess complete applications. Applications will be assessed in accordance with the criteria as described in Section 7 of the guidelines. 9.2 NOTIFICATION All applicants will be notified of the outcome of their application. Successful applicants will be contacted and an appropriate person at the site will be required to sign a research collaboration agreement outlining requirements and funding. 10. FURTHER INFORMATION Further information can be obtained from: Advance Care Planning Australia Phone: (03) 9496 5660 Email: acpdecisionassist@austin.org.au National Advance Care Planning Prevalence Study: Application Guidelines July 2017 Page 11 of 11