Prevalence Study FAQs

Please read through the following frequently asked questions for detailed information regarding the 2018 National Advance Care Directive Prevalence Study.


About the National Advance Care Directive Prevalence Study

The National Advance Care Directive Prevalence Study is an Australia-wide study aiming to examine the prevalence of Advance Care Directives and other advance care planning documentation in the health records of people aged 65 and over. The study involves an audit of health records in selected general practices, hospitals and residential aged care facilities.
No, a pilot study of this project was conducted in 2017. We have used the findings of the pilot study to refine the study protocol and streamline the data collection process.
Yes, the Australian Government has funded Advance Care Planning Australia to conduct the National Advance Care Directive Prevalence Study annually until at least 2020. This will allow us to benchmark the prevalence of Advance Care Directives in Australian health and residential aged care services over time. All eligible services will be able to nominate to participate in each round of annual data collection.

Yes! All eligible sites are able to apply to participate in each round of annual data collection. Each time your site participates in the study, you will receive an individualised, de-identified report of your individual site results regarding Advance Care Directive prevalence.

If your site participates more than once, we will provide you with a report comparing your results from each data collection period. This will give you a clear picture of how your site is tracking over time. You can download an example site report from the National Advance Care Directive Prevalence Study page.


Eligibility requirements

Applications are open to all accredited public and private general practices, hospitals and residential aged care facilities in Australia that meet the eligibility criteria (see below), including those sites that participated in the pilot study.

To be eligible for the study, all sites must meet a set of general criteria, as well as several sector-specific requirements.

General eligibility criteria

General practices, hospitals and residential aged care facilities are eligible to apply if they:

  1. Are an accredited organisation according to sector requirements.
  2. Have the approval and endorsement of their executive team.
  3. Can nominate one staff member to act as the Study Lead (this person will be responsible for coordination of the study at the site and will be the key contact person for Advance Care Planning Australia).
  4. Have internet, email and telephone access.
  5. Have access to devices for online data collection (e.g., computer, laptop or iPad).
  6. Have policies in place about privacy and confidentiality.
  7. Agree that the information provided in their application will be used to generate a Research Collaboration Agreement with Austin Health, if successful (note: the Research Collaboration Agreement outlines the terms and conditions of conducting the study at your site. See a copy of the Research Collaboration Agreement here).
  8. Are willing to sign the Research Collaboration Agreement, preferably within four weeks of being invited to participate in the study.
  9. Meet sector-specific eligibility criteria, as outlined below.

Sector-specific eligibility criteria

Hospitals are eligible to apply if they:

  1. Expect that their site will have at least 50 patients on the day(s) of the study that are aged 65 years or older and have been admitted for at least 48 hours*;
  2. Have a records management system with the ability to extract a list of all admissions of people aged 65 years or older who have been admitted for more than 48 hours on the day(s) of the study.
  3. Can nominate up to two additional staff members to collect the data for the study.
  4. Are willing to support the Study Lead and data collectors(s) to undertake up to three hours of mandatory online training in data collection procedures.
  5. Have the capacity to review a minimum of 30 health records.
  6. Can obtain additional ethics approval and/or a site specific assessment at their site, ideally within an approximate timeframe of six-eight weeks of being invited to participate in the study. If this is likely to be infeasible, sites are invited to contact Advance Care Planning Australia to discuss alternative arrangements.

Residential aged care facilities are eligible to apply if they:

  1. Expect that their site will have at least 50 residents on the day(s) of the study that are aged 65 years or older and have been admitted for at least 48 hours*;
  2. Have a records management system with the ability to extract a list of all admissions of people aged 65 years or older who have been admitted for more than 48 hours on the day(s) of the study.
  3. Can nominate up to two additional staff members to collect the data for the study.
  4. Are willing to support the Study Lead and data collectors(s) to undertake up to three hours of mandatory online training in data collection procedures.
  5. Have the capacity to review a minimum of 30 health records.

General practices are eligible to apply if they:

  1. Expect that at least 30 patients aged 65 years or older will attend their practice on the day(s) of the study;
  2. Have a records management system with the ability to extract a list of all people aged 65 years or older attending the practice on the day(s) of the study.
  3. Can nominate up to two additional staff members to collect the data for the study OR agree to data collector(s) being provided by Advance Care Planning Australia. Any data collectors employed by Advance Care Planning Australia will have completed all required training procedures and be required to meet privacy and confidentiality requirements of the practice/organisation.

The following are NOT eligible to apply:

  • Individuals.
  • Organisations with less than 50 residents/clients.
  • Outreach services.
  • Overseas organisations.

*In hospitals and residential aged care facilities, a minimum of 30 health records will be randomly selected from a list of all eligible records on the day(s) of the study. This is why it is important that your site has a minimum of 50 patients/clients meeting eligibility criteria on the day(s) of the study, so that randomisation can occur.

Yes. However, each site needs to submit a separate application and meet eligibility criteria.
Absolutely. The purpose of this study is to capture a broad snapshot of the status of advance care planning implementation across Australian healthcare services. We understand that sites will be at varying stages of implementation and encourage all sites to apply. The study will provide your site with baseline advance care planning data, which will help you to identify areas for improvement.

Once applications close, the project team will review all applications to ensure the mandatory requirements set out in the guidelines have been met. The assessment criteria are listed in the Application Guidelines. These criteria are designed to ensure that sites have the capacity to conduct the data collection in accordance with the protocol.

All sites will be notified of the outcome of their application within four weeks of the closing date for applications.

See the ‘Application process’ section below for further information.


What’s in it for us?

Participating sites will receive a number of benefits from participating in the study. These include:

  • The opportunity to contribute to groundbreaking Australian research, which may influence future advance care planning policy and strategy.
  • An individualised de-identified report detailing how your site compares to other sites across Australia with regards to prevalence of Advance Care Directives. You can download an example site report here.
  • A baseline estimate of the proportion of people within your service who have an Advance Care Directive and what type of Advance Care Directive they have at the time of the audit.
  • The opportunity to use this study as part of quality improvement and accreditation standards such as:
    • Aged care: Aged Care Accreditation Standards 1-4,
    • Hospitals: National Safety and Quality Health Service Standards and
    • General practice: Royal Australian College of General Practitioners (RACGP) Standards for General Practices 5th edition.
  • A training package to ensure that all staff members involved in the study are upskilled in their knowledge and awareness of advance care planning.
  • Ongoing support from the research team, including a telephone advisory line.
  • Feedback from researchers on how well sites are recording and storing Advance Care Directives.
  • An opportunity to learn more about how sites can improve their delivery of advance care planning and therefore, improve the likelihood that a person’s preferences will be known and adhered to if they can no longer speak for themselves.

Data collectors from each site will benefit from:

  • Webinar training sessions in advance care planning and data collection
  • Regular support and communication from the research team
  • A training manual to supplement the online webinar training
  • Continuing professional development points, where applicable.
Sites will not receive financial reimbursement for participating in the study. However, there are a number of benefits to participating, as listed above.

Advance Care Planning Australia will be available by telephone for consultation throughout the project. Data collectors will be provided with a written manual and access to training webinars so that they can understand how to conduct the research.

Advance Care Planning Australia recognises that the unique nature of general practices may make it difficult for internal practice staff to conduct the audit. Advance Care Planning Australia is able to provide additional support to general practices, which may include providing external data collector(s) to conduct the audit. Please contact us for further information.


Study information

Data collection will occur in 2018. Start dates will vary across sites. The Advance Care Planning Australia research team will work with sites to determine the best timing to collect the data.

This study involves an audit of individual health records to determine the availability and characteristics of Advance Care Directives and other advance care planning documentation amongst people in your service at the time of the study.

Each site will need to establish a team to conduct the research. The project team will include the Study Lead (the person to coordinate the study within the site) and up to two additional staff members to collect the data.

All data collectors will receive a data collection manual and complete an online training package to ensure that they understand how to conduct the audit in a standardised way across participating sites. In addition, data collectors will be able to contact Advance Care Planning Australia during the study should they have any issues or concerns during data collection.

Sites will be asked to nominate preferred date(s) for data collection at their site. These dates need to fall within the agreed data collection period and be consecutive. Ideally, data should be collected over 1-2 days, up to a maximum of 3 days.

On the nominated day(s) of the study, data collector(s) will review a minimum of 30 individual health records of people who meet the study eligibility criteria. Information to be extracted from the records includes demographic characteristics, some general clinical information, information on advance care planning documentation, people’s recorded preferences regarding their care and details of any medically-driven orders. Data will be entered directly into a secure online database.

Sites will need to review a minimum of 30 (and maximum of 50) health records. Sites will be asked to nominate how many records they expect to audit in advance.
It will take approximately 20-45 minutes to complete each record audit. Therefore, data collection for the minimum number of records (30) is likely to take between 15 and 25 hours in total.

Before collecting the data, data collectors are required to complete up to three hours of mandatory study training and understand how to use the manual. On the nominated day(s) of the study, data collectors will need to review a minimum of 30 health records. Each record audit will take between 20 and 45 minutes. Therefore, data collection is likely to take between 15 and 25 hours in total.

Sites that employ more than one data collector will be able to reduce the amount of time taken to collect the data. Sites may consider employing existing staff on additional shifts to collect data.

Data collector(s) should be staff with previous experience in retrieving information from health records, such as quality managers, nurses or allied health professionals (e.g., social workers).

The pilot study of this project revealed specific barriers to data collection in general practices, where staffing limitations may make it difficult the audit to be conducted within the required timeframe. Advance Care Planning Australia is able to provide additional support to general practices to conduct the audit. General practices interested in participating this study are welcome to contact Advance Care Planning Australia to discuss available support.
Data collection needs to fall within a specified data collection period. The research team recognises that sites may need to conduct the minimum of 30 record reviews over a number of days. These dates need to fall within the agreed data collection period and be consecutive. Data should ideally be collected over 1-2 days, up to a maximum of 3 days.

People to be included in the health record audit will be identified via your site’s record management system.

In general practices, the records of the first 30 (minimum) eligible people visiting the practice on the day(s) of the study will be included in the audit.

In hospitals and residential aged care facilities, a minimum of 30 health records will be randomly selected from a list of all eligible records on the day(s) of the study. This is why it is important that your site has a minimum of 50 patients/clients on the day(s) of the study that meet eligibility criteria, so that randomisation can occur. Randomisation will be conducted by the research team using de-identified study codes. The Study Lead will need to match the de-identified study codes back to their eligible records list using a simple key. Study Leads and data collectors will receive training in the randomisation process prior to study commencement.

The following information will be collected from the records:

  • Demographic characteristics (i.e. age, gender, country of birth, Aboriginal and Torres Strait Islander status, religion, language status);
  • Clinical information (i.e. admission/visit date, medical condition, functional performance status, mental health status);
  • Documentation of advance care planning (i.e. type and other details)
  • Person’s preferences regarding their care (i.e. life prolonging treatment, treatment to extend life, other preferences); 
  • Medically-driven orders (i.e. limitations of medical treatment, comfort care, other orders).
No. We are looking for evidence of advance care planning and it is anticipated that only a proportion of records will have this documentation.
The data from the record audit will be entered directly into the online database designed for this project. Tablets/iPads may enable staff to easily enter information into the database.
Yes - if a person’s information is stored in both formats.
No, participating sites need to use their own computers, tablets or iPads.
Sites will be responsible for entering their data directly into the database during data collection.

Application process

To apply to participate in the National Advance Care Directive Prevalence Study, you will need to complete an online Application Form (see advancecareplanning.org.au/prevalence).

The steps involved in completing the application are:

  1. Download and read the Application Guidelines. These guidelines provide an overview of the study and its methodology and the eligibility criteria for participation. This document will assist you to complete the online application form.
  2. Download a PDF copy of the Application Form. This will give you an idea of the questions you will need to answer in the online application form. Viewing the questions before you start your online submission will allow you to collect any further information, documents and approvals you require from within your site before you start filling in the online form.
  3. Ensure you have the approval and endorsement of your executive team (e.g. CEO or another duly authorised representative) for your site to participate in this study.
  4. Download the Research Collaborative Agreement. This document is for your reference only. This agreement will not need to be completed until you have been notified that your site is suitable to participate in the study. You may wish to show a copy to the appropriate person in your executive team (e.g. CEO).
  5. Complete the Online Application Form via the link at advancecareplanning.org.au/prevalence.

Applications are now closed. We will be notifying all applicants on the outcome of their application in August 2018.

Please contact Advance Care Planning Australia for any other questions or queries.

You can download a PDF copy of the Application Form here to view the questions you will need to answer in the application.

The application contains six sections:

  • Section 1 assesses your site’s eligibility to participate in the study. If you tick ‘no’ to any of these questions, your site is not eligible to participate.
  • Section 2 collects information about your site and contact details for the Study Lead and data collector(s).
  • Section 3 asks you to consider why your site would like to participate in the National Advance Care Directive Prevalence Study.
  • Section 4 collects information about current advance care planning practices and processes within your organisation. The information provided in this section will not be used in the assessment process. It will allow us to describe the general characteristics of the organisations participating in the study at the aggregate level. Please note that we expect sites to be at varying stages of advance care planning implementation! The information collected in this section will help us to better understand the current status of advance care planning implementation across Australian health and residential aged care services.
  • Section 5 collects information that will be included in the Research Collaboration Agreement with your site, should your application be successful. Applicants from hospitals will also be asked to provide some information about ethics requirements at their site.
  • Section 6 is the certification section. This section ensures that all information provided in the application is true and correct, the Study Lead understands their role in the study, and approval to participate in the study has been obtained from a person authorised to consent to the study on behalf of the organisation.

Further information on the questions within each section can be found in the Application Guidelines.

Other points to consider about the online application process are:

  • Some of the questions require responses of up to 200 words.
  • You will be able to save your application and return to it again at a later time.
  • If you have pre-prepared your responses based on the downloadable Application Form, allow 20-30 minutes to enter your responses in the online application form.
  • We recommend using a modern browser on a desktop computer or laptop to submit your application.

Once applications close, the project team will review all applications to ensure the mandatory requirements set out in the guidelines have been met. The assessment criteria are listed in the Application Guidelines. These criteria are designed to ensure that sites have the capacity to conduct the data collection in accordance with the protocol.

Sites that are successful in the application process will be invited to participate in the study. Successful sites will be required to sign a Research Collaborative Agreement with Austin Health (preferably within four weeks), which outlines the terms and conditions to conduct the study at the site.

Hospitals 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. Advance Care Planning Australia will support successful sites to gain appropriate ethics and governance approvals within their site, and subsidise any ethics application fees.

Residential aged care facilities and general practices will not be required to complete an SSA.

At least one general practice, hospital, and residential aged care facility from each Australian state and territory will be recruited to participate in the study. In total, a minimum of 24 sites will be included.
All applicants will be notified of the outcome of their application within four weeks of the application closing date.

Ethics and governance

Yes, the Austin Health Human Research Ethics Committee has granted ethics approval to conduct this study under the National Mutual Acceptance (NMA) agreement (reference number: HREC/18/Austin/109). The NMA agreement provides single ethical review for multi-centre research projects for public health organisations in the participating states of New South Wales, Queensland, South Australia, the Australian Capital Territory, Victoria and Western Australia.

The Northern Territory and Tasmania are not part of the NMA agreement. Advance Care Planning Australia will support sites in these jurisdictions to gain ethics approval as necessary.

Advance Care Planning Australia will support successful organisations to gain appropriate ethics and governance approvals to conduct the study at their site.

Health service organisations will 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. Residential aged care facilities and general practices will not be required to complete an SSA.

The National Advance Care Directive Prevalence Study is overseen by a National Research Advisory Group including representatives from Advance Care Planning Australia, University of Melbourne, Australian Institute of Health and Welfare, HammondCare, University of Sydney, University of Western Australia, Queensland University of Technology, University of Queensland, Helping Hand, and the Palliative Care Outcomes Collaboration at the University of Wollongong. The Advisory Group provides oversight on all aspects of the study including the methodology, ethics, risk management, recruitment, data collection, analysis, interpretation of the findings, and reporting.

Within each participating site, a project team will be established to oversee and conduct the study at the local level. Each site will be responsible for assembling and coordinating the team, but it is expected the teams will comprise the Study Lead and 1-2 additional data collectors.

To maintain the privacy and confidentiality of people included in the health record audit, only staff employed by the site and directly involved in the collection of data will access health records. No identifiable information will be collected or provided to the research team. Data will be handled, stored and disposed of according to the National Statement on Ethical Conduct in Human Research 2007.

Reporting of results

The results of this study will be compiled, analysed and used to assess the prevalence of Advance Care Directives in Australian health and residential aged care services.

The results will be reported to the Australian Government Department of Health and published in peer-reviewed journals to be shared with the medical and academic community.

Each participating site will receive an individual report of their results in comparison with other (de-identified) sites across Australia. This feedback will allow sites to gain greater understanding of their advance care planning practices and processes and identify areas for improvement. No identifying information related to the site will be provided to any third party.


Important dates

Key dates for the study are:

  • Sites advised of outcome: August 2018
  • Data collection period: September – November, 2018