It IS all about you - you and your healthcare, to be more specific. 

Self-advocacy for your healthcare does not come naturally. It is easy to feel intimidated by the various facets of healthcare and the hurried people involved. 

There is more and more evidence that being an informed advocate for yourself has several benefits: 

• ensuring care delivered to you is tailored to your needs
• improved understanding of various healthcare options
• improved well-being
• a more positive relationship with your healthcare team

Before we go further, a definition may be helpful: a healthcare provider is any healthcare team member involved in providing healthcare to you.

The following is a tool kit that breaks down how to advocate for yourself in the complex world of healthcare:

Tool #1

Be informed about your healthcare decisions with well-vetted sources, such as MedlinePlus, a service of the National Library of Medicine (NLM), the world's most extensive medical library, which is part of the National Institutes of Health (NIH).

Tool #2 

Knowing that being informed and asking questions does NOT mean you are questioning your provider's knowledge or intelligence; you are asking so that you have a better understanding and believe all of your reasonable options are being openly discussed. 

Tool #3 

Pay attention to your body. Your provider is an expert in their discipline; you are THE expert in your body. Note when something feels different; write it down if it happens again or hurts or causes a lot of concern. Let your provider know about the event, the nature of the sensation, and what possibly brought it on. Note when you feel well, and keep that activity, sleep pattern, and nutritional habits going.

Tool #4 

Take responsibility for your lifestyle decisions. This does not mean, for example, that you cannot advocate for yourself if you smoke cigarettes. What it does mean is that with smoking comes adverse effects on your health, which you need to be honest about when talking with your providers. 

Even better, work closely with your providers to try quitting smoking, and have them on your team to cheer you on. You might be amazed at how much your providers will respect you for being open with them and start working with you in a team-spirit way. They may sense your investment in yourself and want to be part of your success.

Tool #5 

Keep a healthcare journal on paper or your phone. There are several parts to this tool that all work together:

• A journal inspires confidence when meeting with your provider and alerts your healthcare team that you do pay attention.
• Include dates and names of any significant diagnoses, a quick entry of the treatment for each diagnosis, and the treating provider you can pull up and review.
• Keep a symptom log. Write down dates and times of significant or repetitive events when you don't feel right or have discomfort. Write down the:
• date and time
• duration
• nature of discomfort
• what may have brought on the event
• Write down questions for your provider so you remember when you go see your provider. Include anything of interest you would like to discuss in terms of options for your healthcare.
• Keep track of dates, times, names, subjects, contact information, and notes from important discussions concerning your healthcare, whether billing, scheduling of diagnostic studies, or anything else.

Tool #6 

Understand your medications: Write in your medical journal how and when you should take EACH medication, along with details such as 

• Should they be taken with food or on an empty stomach?
• What time of day should you take each of them?
• Is there something else you would like to try?
• Would you like to attempt a trial pause?
• Are they working?
• Can you afford them?
• Are they causing any uncomfortable side effects, such as dizziness or nausea?

Tool #7 

Clear and respectful communication with your provider during and between visits can improve the patient/care provider relationship.

Tool #8 

Know your healthcare benefits. This can help you avoid a lot of headaches and heartache.

• Look up in-network providers or call your member services and ask for a list of in-network specialist providers near you specific to your needs.
• Understand your deductible, co-insurance, flexible savings, and healthcare savings accounts. Your insurance company's member services will likely be happy to help.
• Avoid using out-of-network providers, which can snowball into a financial disaster.
• Work with your primary care provider or a specialist to get a medical necessity prior authorization to go out of network if you cannot find a provider who fits your needs. 

Tool #9 

When preparing to contact or visit your primary care provider, write an agenda in your journal, along with the facts you have gathered and the questions you want to ask. This is especially helpful if you only have 15 minutes with them; knowing exactly what you want to discuss will give you the most value for your time.

Tool # 10 

Expect a good outcome from your encounter with your provider. This will help calm your nerves and set a good tone for your visit.

Tool #11

 Prepare to be honest, even if the topic of conversation is potentially embarrassing. How can your provider help you if they are not aware of the full extent of your concerns?

Tool # 12 

Approach your visit with a sense of cooperation. This is you and your provider working together, not your provider telling you how things will go.

Tool #13 

Take notes during your visit and put them in your journal, or have someone with you to do so. A second set of ears is often helpful in any event. The notes will help ensure you remember the options discussed, and you can then look up information from vetted sources to make an informed decision.

Tool #14

Repeat back to your provider from your notes what was discussed. This ensures you understand what you and your provider discussed. Update your notes if your provider clarifies anything.

Tool #15

 Don't be afraid to change providers if your current provider attempts to intimidate you from advocating for yourself or talks over you and ignores what you have to say. 

Trust in your provider is critical.

Summary

When you take responsibility for your personal health decisions, communicate clearly, keep a journal, make an agenda, expect a good outcome, and use the rest of the tools in your toolbox, you have an excellent chance of gaining traction and satisfaction in your healthcare. 

More than likely, you will have a more open and honest relationship with your doctors and other providers and see your healthcare expenditures and doctor trips decrease. 

You may feel better, have more energy, and gain increased enjoyment from life. It takes time, but even small changes will bring improvement. Go forth and advocate!

I would love to hear how this journey goes for you JillSquire@TheBirdingNurseFreelance.com

References:

ASH 2021: The Importance of Patient Self-Advocacy, Rozalynn Hite, HealthTree Foundation

 https://healthtree.org/myeloma/community/articles/ash-2021-importance-of-self-advocacy

Why You Should Keep a Symptom Journal, Lisa Maria Basile, EndocrineWeb.com

 https://www.endocrineweb.com/why-you-should-keep-symptom-journal

Don't be Shy – four tips for talking with your doctor, Wellness and Prevention, Hopkins Medicine

 https://www.hopkinsmedicine.org/health/wellness-and-prevention/dont-be-shy-4-tips-for-talking-to-your-doctor

Patient Guide: Ten ways to improve communication with your doctor, UPMC Western Maryland

 https://www.wmhs.com/patient-guide-10-ways-improve-communication-doctor/

The Effect of Patient Self-Advocacy on Patient Satisfaction: Exploring Self-Compassion as a Mediator Leslie Ramos Salazar To cite this article: Leslie Ramos Salazar (2018): The Effect of Patient Self-Advocacy on Patient Satisfaction: Exploring Self-Compassion as a Mediator, Communication Studies, DOI: 10.1080/10510974.2018.1462224 To link to this article: https://doi.org/10.1080/10510974.2018.1462224

https://self-compassion.org/wp-content/uploads/2018/05/Ramos2018.pdf

Talking With Your Doctor, National Coalition Cancer Survivorship

https://canceradvocacy.org/resources/publications/talking-with-your-doctor/

Self-Advocacy Handbook, National Coalition Cancer Survivorship

https://canceradvocacy.org/wp-content/uploads/Self_Advocacy.pdf

Biography:

Jill Squire is a long-time oncology RN with experience in Emergency Room (ER), critical care, administrative, and stem-cell transplant nursing. Jill was certified for the third time in 2022 in Oncology Nursing (OCN). She currently works as an Oncology and Hemophilia Complex Case Manager and is building a secondary freelance writing career in health, healthcare self-advocacy, and bird watching. Jill's passions are informed health self-advocacy, shared decision-making, and reading and professionally publishing relevant evidence-based practice. For fun, Jill enjoys trail cycling, hiking, and birdwatching with her husband; and baking for her family. Jill believes health and enjoying the outdoors have a positive connection, even if for just a few mindful moments. She feels privileged to serve both as a co-facilitator for the Cancer Bridges GI Cancer Support group and as a reverent witness to the support offered by the members to one another.

Thank you for reading Patient Education Essentials, the Write Shift RN blog.

Disclaimer: This article was written as a guest post for Write Shift RN LLC's blog. The information in it may not be wholly fact-checked or edited, allowing the reader to see the writer's work and skills firsthand. This information is not intended as medical advice. It is for informational and educational purposes only. Always talk to your doctor or other qualified healthcare providers about any questions or concerns you may have regarding medical conditions.