What does patient advocacy mean? Who can do it? And why is it important for people living with chronic conditions?
This guide to patient advocacy will provide you with a clear definition of what the term means, easy examples to learn from, and our top tips on how to practice self-advocacy too.
What is patient advocacy?
Patient advocacy is any activity that’s performed by patients themselves or on their behalf to protect or support their needs as they manage their health and interact with the healthcare system.
If you’re living with a chronic health condition and aren’t sure how to start practicing patient advocacy for yourself, you could try some of the following examples:
- Ask a friend or family member to attend appointments with you
- Discuss the pros and cons of a suggested treatment plan with your doctor or nurse
- Reach out to a government group that could provide you with support during your health journey
- Requesting a second opinion from another healthcare professional
You can find more detailed patient advocacy tips below.
Principles of patient advocacy
Patient advocacy is about speaking up for yourself and easing your healthcare journey. Before we discuss how individuals and organizations can do this, let’s look at some basic patient advocacy principles.
Healthcare professionals are also encouraged to practice patient advocacy. This includes physicians, nurses, and allied health care providers. The following is an introductory list as set out in the American Nurses Code of Ethics:
- Respecting human dignity
- Committing to the patient
- Treating all patients equally
- Protecting the rights of the patient
- Preventing undue suffering
Who can be a patient advocate?
Technically, anyone can advocate for a patient. Most commonly, patient advocates are friends, family members, hospital-appointed individuals, nurses, societies or associations, and government groups. It’s also within your power to practice self-advocacy and advocate for yourself – more on that later.
Here are some examples of different professional patient advocates and what they offer:
If you’re based outside of the US, be sure to explore what patient advocacy services your government or local community offers.
Groups offering free support
Non-profit organizations may offer patients free services, often focusing on supporting marginalized or vulnerable groups. For example, all services provided by Patient Advocate Foundation are free to the patient and those working on their behalf. Similarly, the National Organization for Rare Disorders assistance programs help patients with rare diseases obtain life-saving or life-sustaining medication they could not otherwise afford.
Associations, societies, and foundations
Often disease- or condition-specific societies like the American Cancer Society offer tailored advice, while The National Patient Safety Foundation creates resources and lobbies for patient safety.
Private advocacy groups
For-profit patient advocacy groups or individuals – like Patient Pal or Health Advocate – offer services to patients on an individual basis. Paid for directly by the patient or sometimes by the patient’s employer, they can support a range of issues, from getting diagnosed correctly to health insurance claims.
Patient advocates in hospitals
In-hospital patient advocacy is often undertaken by nurses. Nurses can help their patients assert their rights and secure the treatment they need by working with decision-makers, staff, or doctors to propose medical solutions or help solve treatment problems.
Several US government groups help patients on a large scale. For example, The National Institutes of Health (NIH) conducts medical research, while The Food and Drug Administration (FDA) regulates the foods and medicines we ingest.
Patient advocacy examples
If you need extra support on your patient advocacy journey, there are patient advocates who can help you to communicate with healthcare providers, make decisions about your healthcare, and get financial, legal, and social support. They may also work with health insurance companies to support a patient’s case management and financial planning.
Here are a couple of patient advocacy examples:
Patients facing memory loss, a breakdown of routine, or isolation may lose control of their prescription management. A patient advocate might support by advising on local pharmacy delivery options, stocking up on certain medicines, setting reminders, and asking about other needs.
Discussing pros and cons
Some treatment plans include complex medications with varying side effects. A patient advocate might discuss those potential side effects in detail, help form questions for the next doctor’s appointment, and direct patients to further resources and networks.
As well as patients themselves, caregivers and family members can also experience stress and uncertainty. A patient advocate might help by representing or providing support to these people. They may also offer to mediate should a family conflict regarding healthcare arise.
Why is patient advocacy important?
With rising healthcare costs and an aging population, the healthcare system – and the people working within it – are under more pressure than ever. Despite their best efforts, appointments with doctors and healthcare professionals can sometimes feel stressful and time-pressured.
Many people experience uncertainty when they attend doctor appointments, making it hard to retain the information being shared. Studies show that patients often only remember about half of the information they receive at appointments accurately.
Health insurance and all its complexities also play a huge role in American healthcare, which can be a further barrier for people trying to figure out the system. According to a United Health survey, only 9 percent of patients understand basic health insurance terms.
With all these factors in mind, it’s important that you understand and advocate for your needs to ensure you get the necessary care and support on your road to self-management and recovery.
Patient advocacy and chronic conditions
The impact of living with a chronic condition is far-reaching. People need to adapt their daily routines and lifestyles to accommodate their changing needs. Self-management becomes crucial, and the additional mental health strain can take its toll. Symptoms and experiences can also vary significantly from patient to patient.
With this in mind, people living with chronic conditions and their loved ones benefit from support in the form of empathy, commitment, and a multi-disciplinary approach. Patient advocacy can provide emotional support or connect you to appropriate mental health resources.
Tips for practicing self-advocacy
Having a patient advocate in your corner as much as possible is an excellent way to approach your healthcare journey. But there will still be times when you’ll need to attend an appointment on your own or advocate for yourself.
Remember, your opinion is important, and feeling heard and understood is vital to feeling better. Here are our top tips for practicing self-advocacy:
Know your stuff
Preparation is your best friend. Before any appointments or interactions, take the time to plan your journey and write down all the questions you’d like to ask. Research your symptoms and possible treatments, and familiarize yourself with some medical terms that might come up in advance so you can feel informed and confident.
Did you know?: In the US, The Civil Rights Act of 1964 and Executive Order 13166 mandated that interpreters be available in healthcare institutions that receive federal funding. So, if English is not your first language, you have the right to request that your patient documents are translated and that an interpreter is present at your appointments.
Remember, it’s important to speak up. If your doctor proposes something you disagree with, or you don’t understand their reasoning or feel confused, you have every right to ask for clarification. Some examples of the sorts of questions you might wish to ask in an appointment could include:
- What treatment is recommended for my diagnosis? What are the benefits and risks?
- Are there any alternatives to this treatment plan?
- How and when will I receive my treatment? How long will treatment last?
- What are the side effects?
- How can I tell if the treatment is working?
- Is there anything I can do to aid my recovery?
You can even practice some of these questions before your appointment to get used to saying them out loud. There is no such thing as a stupid question, and no topics are off-limits – especially when it comes to your health.
Knowing your health history and keeping a log of your previous and current medications is invaluable. Also, taking notes before, during, and after appointments will help you speak up for yourself with more confidence. It can be easy to lose track of conversations, so being organized and writing things down can help you stay on top of incoming information and takes the pressure off trying to memorize everything.
Advocating for yourself or getting the advocacy support you need, committing to self-care, and feeling confident and in control can prove very helpful when living with a chronic condition.
At Sidekick, we recognize the importance of patient advocacy. Our programs were designed to help you take back control of your health so you feel like you’re in the driver’s seat of your journey. Learn more about what Sidekick can do for you by exploring our programs right here.