Self Advocates Becoming Empowered (SABE)
“SABE is the United State’s national self-advocacy organization. We are a
national board of regional representatives and members from every state in the
US.”
Facebook: https://www.facebook.com/groups/36140889219/
Youtube: https://www.youtube.com/user/govoter
National Patient Advocate Foundation NAPF)
“NAPF is the advocacy affiliate of the Patient Advocate Foundation, represents the
patient voice, both the powerful stories of individuals and the collective needs of
the community. Our staff and volunteers work at the local, regional, and national
level to promote access to affordable, quality health care for people with chronic,
debilitating or life-threatening illnesses. We are thought leaders in developing
policies that protect patients and caregivers from lack of transparency, medical
debt and lack of access to care at key points during their illness.”
Facebook: https://www.facebook.com/NPAForg/
Instagram: patient_advocates
Twitter: @NPAF_tweets
The Patient-Centered Outcomes Research Institute
“PCORI was established to fund research that can help patients and those who care
for them make better-informed decisions about the healthcare choices they face
every day, guided by those who will use that information.”
Facebook: https://www.facebook.com/PCORInstitute
LinkedIn: https://www.linkedin.com/company/patient-centered-outcomes-research-
institute-pcori-/
Twitter: @PCORI
Vimeo: https://vimeo.com/pcori
AdvocateUS
“On a mission to protect patients, create greater equity and improve access to
affordable quality care, one grassroots issue campaign at a time.”
Twitter @advocateusorg
Medical Herstory
“Youth-led not-for-profit organization advancing gender health equity through
storytelling, patient advocacy, medical education, and undoing stigma”
Facebook: https://www.facebook.com/medicalherstory/
Instagram: medicalherstory
Twitter: @MedicalHerstory
Popular Hashtags
#chronicillness
#medtwitter
#patientadvocacy
#patientasanexpert
#patientshavepower
#patientprofessionalpartnership
Periodicals from 2020 &; 2021* on the Take Charge Program (https://takecharge.care/)
Step 1: Advance directives
Step 2: Records and history
Step 3: Questions and symptoms
Step 4: Handwashing to prevent infections
Step 5: Use an advocate/be an advocate
* “How to be your own health advocate” by C.D. Kroll (see Step 5) is from 2018. It is included in
this list because it is very relevant to the topic.
STEP 1: ADVANCE DIRECTIVES
Block, Sandra. “Get these forms now.” Kiplinger’s Personal Finance. Vol. 74, issue 7 (July 2020) p.
63.
Sandra Block gives a brief overview of legal documents that are important to have to best
manage family emergencies like a serious illness. The documents discussed include the durable
power of attorney, health care proxy (also called power of attorney for health care or an advance
directive for health care), medical information release and the living will. Also noted in the
article is “Five Wishes,” a form that serves as both a living will and a health care power of
attorney that is accepted in 44 states (including New York) and the District of Columbia.
Weston, Liz. “Take control now with advance medical directives.” Indianapolis Business Journal.
Vol. 41, issue 15 (June 5, 2020) p. 2B.
https://link.gale.com/apps/doc/A628405137/HRCA?u=nysl_li_scls&sid=bookmarkHRCA&xid=
646e7271
As noted in this article, advance directives are legal documents that include living wills and
health care proxies or powers of attorney. A living will enables you to inform your loved ones
and healthcare providers about the kinds of medical care you want at the end of your life. A
health care proxy / power of attorney lets you to designate someone to make medical decisions
for you if you are unable to communicate. Weston discusses these important documents and
offers tips on finding free/inexpensive advance directive forms, making documents valid, the
ability to make changes, choosing your advocate, and sharing your plans.
STEP 2: RECORDS & HISTORY
“Are you taking too many medications?” Harvard Health Letter. Vol. 46, issue 1 (November 2020)
pp. 1, 7.
https://search.ebscohost.com/login.aspx?direct=true&db=fth&AN=146746545&site=ehost-live
As noted in the article, age and health problems often come with a long list of prescribed and
over the counter medications that can become challenging to manage. Not only will a large drug
regimen be inconvenient and expensive, but it can increase the risk of dangerous side effects,
interactions and medication errors, as well as cause drug regimen fatigue and a lower quality of
life. The article suggests ways to go about simplifying your regimen and notes the importance of
working with your doctors and pharmacist to do so.
“Avoid medication errors with these tips."; Daily Herald. (January 21, 2020) p. 4.
https://link.gale.com/apps/doc/A611870580/HRCA?u=nysl_li_scls&sid=bookmark-
HRCA&xid=48399b7c
According to this article, patients who actively participate in their healthcare can avoid harmful
medication errors. By following medication instructions, maintaining an updated list of
medications, honestly reporting height and weight, and following up with doctors and
pharmacists with questions and testing, patients can avoid errors that can cause harmful
interactions and dangerous side effects.
Wanagat, Jonathan. “Family heart disease history…swollen feet.” Healthy Years. Vol 18, issue 4
(April 2021) p. 8.
https://link.gale.com/apps/doc/A656765783/HRCA?u=nysl_li_scls&sid=bookmark-
HRCA&xid=023ad8a1
In this article, Jonathan Wanagat, MD, PhD, answers two questions: the first question is, “Why
do doctors ask about family history of heart disease?” In reply, Wanagat explains why a
person’s family health history is a good indicator of his/her health risk factors, and notes how
such information helps doctors keep a watchful eye on issues a patient might develop. Wanagat
also answers a question about swollen feet. Here he discusses peripheral edema and a few other
less common, and more serious, causes of fluid retention and swelling that include heart disease,
heart failure, kidney and liver disease, thrombophlebitis, and venous insufficiency.
STEP 3: QUESTIONS & SYMPTOMS
Hiss, Kimberly. “Build a better doctor’s appointment.” Health. Vol. 34, issue 8 (October 2020) pp.
75-79.
https://0-search-ebscohost-
com.search.livebrary.com/login.aspx?direct=true&db=fth&AN=145357538&site=ehost-live
This article offers tips and strategies from healthcare professionals that can help you build a
constructive partnership with your doctor. One strategy, for example, is to visit your doctor for
annual exams, not just when something is wrong. With regular exams, many things – cancer, for
example - can be caught early. Another example is to be as clear as possible about your
symptoms and history. This information, along with your physical exam and tests, will help your
doctor make informed decisions about your diagnosis and treatment plan. By following such
strategies, you can help your doctor help you.
Reece, Tamekia. “The insider’s guide to checkups.” Parents. Volume 96, issue 9 (September 2021)
pp. 15–19.
http://0-
search.ebscohost.com.search.livebrary.com/login.aspx?direct=true&db=fth&AN=151619953&si
te=ehost-live
Working with the American Academy of Pediatrics, Parents created the AAP Panel, a group of
pediatrician moms and dads who discuss health issues and offer advice. In this article, the AAP
Panel shares tips on how parents can get the most out of their child’s well visits. They
recommend, for example, being prepared with questions, talking about your child’s mental
health, being honest, asking for clarification if confused, and much more.
STEP 4: HANDWASHING TO PREVENT INFECTIONS
Flynn, Meagan. (2020, March 23). “The man who discovered that unwashed hands could kill, for
which he was ridiculed.” Washington Post. (March 23, 2020) n.p.
https://link.gale.com/apps/doc/A618327798/HRCA?u=nysl_li_scls&sid=bookmark-
HRCA&xid=f019e6ce
At the beginning of our ongoing pandemic (COVID-19), doctors and officials around the world
pleaded with people to wash their hands. Handwashing, according to scientists, is a simple yet
effective way to stop the spread of infection. The benefit of this basic hygienic practice,
however, was not always known. The practice was pioneered by Ignaz Semmelweiss, a 19 th
century Hungarian doctor, after he performed an experiment in a maternity ward in a Vienna
hospital in 1847. This article looks at Semmelweiss, his discovery, and why his findings were
not initially accepted. It also looks at the ridicule Semmelweiss received from his superiors.
STEP 5: USE AN ADVOCATE / BE AN ADVOCATE
“5 tips to help you stay safe during medical treatment.” Harvard Women’s Health Watch. Vol. 28,
issue 8 (April 2021) p. 6.
http://0-
search.ebscohost.com.search.livebrary.com/login.aspx?direct=true&db=fth&AN=149404838&site=e
host-live.
This article provides 5 tips on how to stay safe during medical treatment. The tips include:
knowing your medications, taking advantage of technology, speaking up, enlisting support, and
navigating high risk situations. While health care professionals have taken many steps to reduce
preventable problems, mistakes unfortunately still happen. By following the tips in the article, a
patient can help protect themselves and their loved ones from common mistakes that might
occur.
Kroll, Cinnamon D. “How to be your own health advocate."; Vibrant Life. Vol. 34, issue 1 (Jan.-Feb.
2018) pp. 16+.
https://link.gale.com/apps/doc/A521875552/HRCA?u=nysl_li_scls&sid=bookmark-
HRCA&xid=fb23faea
The author – who has not only received help from an advocate, but has been employed as an
advocate/patient representative herself - believes that the cause of preventable medical errors is
usually a lack of communication. She notes how in times of crisis, patients don’t “hear” the same
and are apt to misunderstand key information. She offers advice on how patients can speak up
and advocate for themselves, including taking notes, changing physicians, using technology
(patient portals, online medical records, etc.), taking advantage of opportunities to learn, finding
a helper/advocate, and being brave. As Kroll writes, “learning to be your own health advocate is
a skill that can literally save your life.”
Rabbitt, Meghan. "What's wrong with ME?"; Prevention. Volume 72, issue 4 (April 2020) pp. 48-55.
https://link.gale.com/apps/doc/A618470095/HRCA?u=nysl_li_scls&sid=bookmark-
HRCA&xid=21555faf
As noted in this article, women are often misdiagnosed and have difficulty getting accurate,
timely answers from their health care providers. The author discusses conditions that are most
likely to be misdiagnosed in women including heart disease, autoimmune disease, endometriosis,
polycystic ovary syndrome (PCOS), sleep apnea, as well as breast and ovarian cancer, and offers
suggestions on what women can do to advocate for themselves.
Adult
Bauer, J.C. (2019). Not What the Doctor Ordered: Liberating Caregivers and Empowering Consumers for Successful Health Reform (3rd ed.). Productivity Press. http://www.worldcat.org/oclc/1159425604
Goldberg, S. (2019). How to be a patient: The Essential Guide to Navigating the World of Modern Medicine. Harper Wave. https://search.livebrary.com/record=b5347825~S85
Ofri, D. (2017). What patients say, what doctors hear. Beacon Press. https://search.livebrary.com/record=b5107503~S85
Berry, K. D. (2019). Lies my doctor told me: Medical myths that can harm your health. Victory Belt Publishing Inc. https://search.livebrary.com/record=b5351774~S85
Juvenile
Scarry, R. (2014). Richard Scarry's Nicky goes to the doctor. Golden. https://search.livebrary.com/record=b4768449~S85
Denmark, A., & Motz, M. (2018). Olivia's doctor adventures. CreateSpace. https://search.livebrary.com/record=b5429922~S85
Bennett, H. (2017). The fantastic body: What makes you tick & how you get sick. Rodale. https://search.livebrary.com/record=b5197821~S85
