1. How To Be Your Own
Health Advocate
Marie Ennis
Europa Donna Ireland
The Irish Breast Cancer Campaign

2. 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

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

5. 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

6. 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

7. 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

8. Healthcare Engagement Steps
1. Ask questions
2. Read accurate health information
3. Maintain your own health records

9. 1. Talking To Your Doctor
A. Ask Questions
B. Be Prepared
C. Communicate Clearly

10. 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

11. 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?

12. 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?

13. 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

14. C. Communicate Clearly
• Ask your most important • Ask the doctor to explain
questions first, in case the what he or she said in terms
doctor runs out of time you understand
• Be clear about what's • Repeat back in your own
bothering you words what you think the
doctor meant
• Be honest about how much
you really smoke, drink, or • Tell your doctor if you need
eat; whether you’ve stopped more information
taking your medication

15. 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

16. Behind The Headlines

17. 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?

18. 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

19. 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

22. 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

23. 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

24. 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

25. 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

26. 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!