How To Be Your Own Health Advocate

Marie Ennis

Europa Donna Ireland The Irish Breast Cancer Campaign

Health Advocacy

Health advocacy encompasses direct service

to the individual or family as well as activities

that promote health and access to health care

in communities and the larger public.

Advocates support and promote the rights of

the patient in the health care arena, help

build capacity to improve community health

and enhance health policy initiatives focused

on available, safe and quality care. Wikipedia

It’s important that we be self advocates for our health because who better than us knows what we need? ~ Jan

I believe being your own advocate means moving past the paralysis of bad news into active participation. If we don’t participate, our voice isn’t heard and decisions are made which may not be the best for our physical and/or emotional health. Once we actively engage in our own health care, we start educating ourselves, asking questions and demanding answers, and making hard choices. Not only are better decisions made, but we take back some control over our lives. ~ Debbie

You have to take responsibility for understanding the risk and benefits for any proposed treatment. You can’t accept doctors recommendations blindly. My oncologist initially recommended ‘a moderate course’ of chemotherapy to treat my breast cancer. But after further testing and a careful look at the benefits versus risks we both agreed the risks and benefits were about equal. Therefore, I opted out. I think I made the right decision. ~ Lisa

Engaging In Your Healthcare

We have to participate actively and knowledgeably in our care if we are to realize its benefits ~ Jessie Gruman

"I am constantly impressed with the tools that are now

available to treat diagnoses that – even a decade ago –

were death sentences. But what is widely overlooked

about these advances is the extent to which their success

depends on our participation. We have to show up. We

have to do the exercises. We have to take the pills.We

have to avoid the risks – or we don’t realize the benefit."

Delivered at the Institute for Clinical Systems Improvement’s Colloquium on Health Care Transformation: “Thriving in an Era

of Health Care Reform: Advancing Accountability, Affordability and the Patient Experience,” St. Paul, Minnesota,

May 18, 2011 http://e-patients.net/archives/2011/06/jessie-gruman-at-icsi.html

Healthcare Engagement Steps

1. Ask questions

2.Read accurate health information

3.Maintain your own health records

1. Talking To Your Doctor

A. Ask Questions

B. Be Prepared

C. Communicate Clearly

The most important ingredient to being a successful advocate is to embrace your right to ask as many questions as necessary and as often as necessary until you understand all your options. There are never any “stupid” questions ~ Cara

A. Ask Questions

• What is my condition?

• How was it caused?

• What treatment do you propose?

• Are there other treatment options available?

• What is the expected course of this illness if I don’t have this treatment?

Ask About Your Medication

• How does this medication work?

• Should I take it with or without food?

• Can I take it with other medications?

• Any possible side effects?

• Do I need to follow any restrictions (alcohol, driving)?

• How long will I need to take my medicine?

• What should I do if I miss a dose?

B. Be Prepared

• Research your symptoms

• Make a list of the most important issues to take with you

• Mention your relevant family history

• Take notes

• Ask someone to come with you to your doctor visits

C. Communicate Clearly

• Ask your most important

questions first, in case the

doctor runs out of time

• Be clear about what's

bothering you

• Be honest about how much

you really smoke, drink, or

eat; whether you’ve stopped

taking your medication

• Ask the doctor to explain

what he or she said in terms

you understand

• Repeat back in your own

words what you think the

doctor meant

• Tell your doctor if you need

more information

2. Accurate Knowledge

• Knowledge is the key to personal health advocacy

• Your knowledge about your illness, and how you use this knowledge, can make a difference in how well you live.

• Everyone can find the information they need. If you don’t know where to begin to look or if you are not sure you can do it yourself, you probably do have friends or relatives who can help find information

Behind The Headlines

Fact Or Fiction?

• Don’t just read the headline. Read the original study report, and look for details about the research done to support this new theory.

• Was the study in humans? Often these tests will not have been tried on humans yet. What works in animals does not always have the same effect on people.

• How big was the study? Has it been reviewed by experts?

• Look at the author's credentials. Are they respected in their professional field?

• Does the story make a drug sound like it’s available at the

local pharmacy when it’s really only in an early-phase

trial?

Internet

• A lot of good information online and a lot of false information

• Ask your doc what sites s/he recommends

• Discuss findings with doctor

• Important to question your sources

• Trust your judgment - too good to be true usually means it is

How To Evaluate A Website

• Who manages this information? Check the

"About Us" section

• What is the original source of the information

that they have posted? Published in research

journal?

• How is information reviewed before it gets

posted? Peer reviewed?

• How current is the information? Online health

sites should show the date of publication and

last review

3. Personal Health Record

Can you get copies of your records/treatment summaries?

As you move forward, ask for copies of reports, test results etc. while you're in the doctor's office

How To Keep Your PHR

• File folders

• Three-ring binders

• Memory stick

• Internet medical record services

• Both electronic and paper records is a way to have a back-up set of files

.I would suggest keeping copies of all of your records at home and/or making an Excel file with dates, main points, changes in medications, major tests, etc. Plus keeping a computer list of all of your medications. I also make a small copy of these lists to carry in my bag and both my husband and I carry copies of each other's lists. ~Lois

What To Include

• Personal Information

• Family Medical History

• Your Past Medical History

• Next of Kin Contact Details

• Health Insurance Details

• Family Doctor Contact Details

• Blood Type

• Allergies

• Medication (list any drugs and dosage)

• Consultant Reports

• Routine Test Results

In conclusion….

“The end result of advocacy is empowerment. Sweet empowerment. Advocacy makes you more than just a number or statistic; you become a force to be reckoned with, a questioner. And there is great comfort in answers that make sense to you” ~ Renn

Remember, your best advocate is you!