Self-advocacy for Consumers

Self-advocacy for Consumers

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Why you should become a self-advocate

The health care system can be confusing and complicated, even for the people who work in it. When you don’t understand or can’t make choices about your own health care, you can have poorer health.

Self-advocacy means taking an active role in managing your health or the health of someone you care for, and learning all you can about the disease or condition and the various treatment options so you can make decisions about care that is right for you.

Self-advocacy is the ability to speak-up for yourself and the things that are important to you.  Some examples of self-advocacy at work are:

  • understanding the health system,
  • asking to see a different provider when you are unhappy,
  • ensuring you have time to consider and make decisions, and
  • questioning whether more tests or procedures are really necessary.

Shared Decision Making

Shared decision making, or the idea that a patient should participate fully in decisions about their health care, is relatively recent.  Many people are used to a system where the doctor is in charge because they know best.  Your doctor may be the expert on the medical condition, but you are the expert on yourself and your life.

Many consumers believe that shared decision making is vital for them to have their best possible health and make sure that their needs are met. But it means a new way of thinking about the relationship between consumers and health professionals, and a new way of talking with health care providers.

Shared decision making is a partnership that relies on everyone knowing what is going on and what the options are. Learn more about shared decision making on the Australian Commission for Safety and Quality in Health Care’s website.

Self-advocacy is one way to ensure that you really do have a partnership with your doctor and that you are able to participate in genuine shared decision making.

It is important to ask for what you need and want, share your thoughts, feelings and experiences, and be involved in treatment decisions to get the best health outcomes.

Some ways that you can become a self-advocate are:

Realising that you know yourself and your body better than anyone else, you can use information and resources – from people to the internet or the printed word – to help make decisions about your treatment that suit you and your priorities.

When you have complex health issues, it can help to set one main treatment goal to work towards. For example, you could have a goal to be able to move around your home safely as your first priority, then move on to another goal, such as reducing your need for pain relief.

In other words, you are choosing to manage your health in a way that suits your individual priorities or circumstances.

Self-advocacy means you are an active participant in your own healthcare, working in partnership with doctors, allied health professionals, even other patients.

Seeing the relationship with your health care team as a partnership helps make you part of decision-making and the management of your diagnosis and treatment.

Learn about your medical condition(s) and look for information from a range of perspectives and sources. This can include:

  • recording symptoms and family histories,
  • talking with health care professionals and other patients,
  • using the Internet and libraries for researching relevant diseases and treatment options, and
  • keeping an up-to-date medical history.

You can find out how to get helpful information on our Finding good health information and Questions to ask pages.

Learn about your medical condition(s) and look for information from a range of perspectives and sources. This can include:

  • recording symptoms and family histories,
  • talking with health care professionals and other patients,
  • using the Internet and libraries for researching relevant diseases and treatment options, and
  • keeping an up-to-date medical history.

You can find out how to get helpful information on our Finding good health information and Questions to ask pages.

We sometimes read about major medical errors, but millions of “smaller” mistakes take place every day. These can include being given the wrong medications, being given them at the wrong time, or acquiring infections in hospitals.

If you know what your medications are, what they are for, and how you are supposed to take them, you can help make sure that you keep taking them the right way when you are in hospital.

For more information on staying safe in hospital, have a look at our Tips for Safer Health Care page.

The best way to improve the health services that you use is to have a say in how the services are run. You could be a consumer representative on a committee, a volunteer or a patient advocate.

If you are interested in becoming a consumer representative, you can find out more on the Health Care Consumers’ Association website and explore what options there are for shaping health services in the ACT.  HCCA runs consumer representative training and can let you know when a representative role is available.  To find out more, contact the HCCA office on 6230 7800 or at [email protected] .

Health services value feedback, both good and bad.  It helps them to know what they are doing well, what needs improving and what might be concerning for consumers.

Each service will have a different method for consumer feedback, but staff will be able to help you or you can check on their website.

You can visit the ACT Health website for information about giving feedback on services in the ACT.

If you are unhappy about the care you have received, you can find out more about how to make a complaint here.

Everyone in Australia who is seeking or receiving health care has certain rights.

You have a right to:

  1. Access – access to healthcare services that meet your needs
  2. Safety – receive safe and high-quality care
  3. Respect – be treated with dignity and respect
  4. Partnership – be included in decisions and choices about your care
  5. Information – be informed about services, treatment options and costs in a clear and open way
  6. Privacy – have your privacy respected and the information you provide kept confidential
  7. Feedback – comment on care and have your concerns addressed.

You can find a copy of the Australian Charter of Healthcare Rights here.  For more detailed information on your healthcare rights, go to the Australian Commission on Safety and Quality in Health Care website.

Resources about self-advocacy

  • The Centre for Clinical Interventions has an online workbook called Assert Yourself! It teaches you ways to share your needs clearly, without being aggressive.
  • This article from Psychology Today shares a doctor’s perspective on empowering patients to become self advocates.

Last Updated on 9 January, 2024.