How did you first learn patient advocacy skills
and start helping other people?

I started learning advocacy skills on a Saturday afternoon when a car
accident took me from a medical intern to a patient with a head injury.
I was not a smart patient: My medical knowledge didn’t help me and
I didn’t ask questions and wait for someone to provide answers.
After the initial pain and uncertainty of the emergency department,
I passively did what a neurologist recommended even though I knew
he wasn’t listening when I described my symptoms. I was so ineffective
as a self-advocate I lost five years before getting so frustrated I asked
for a second opinion. I was afraid having no neurologist was worse
than having an unhelpful one and that my current neurologist would
drop me if I asked for another neurologist’s thoughts.

The consultant who provided the second opinion listened to my history,
asked several questions, and came up with the right diagnosis, one the
previous neurologist had never discussed at all. I started on medication
and began to build a life. That neurologist is still my doctor, over 20
years later.

Over the years, conversations with other people living with chronic
illnesses, parenting a child with multiple disabilities, and meeting other
people trying to represent children with medical challenges have taught
me a lot about patient advocacy: how to identify what care is needed,
how to get it, and who to get it from.

Since the late 1990s, I have been privileged to give workshops on
patient advocacy and to act as an advocate for other people as they
struggled to get a diagnosis for an illness or develop a care plan after
confirming the presence of a disease.

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How can I learn patient advocacy skills?

Over the years, I have learned to present patient advocacy as a series
of skills that build on each other:

  • Listening to your body and recording what it tells you
  • Communicating effectively with healthcare providers
  • Learning about a condition: Finding resources to educate
    and support
  • Establishing a healthcare plan and getting your providers to
    accept it
  • Preventing problems and knowing how to solve them before
    crises occur
  • Understanding your healthcare system, including knowing your
    rights and how to approach insurance, hospital, or other issues
  • Planning for hospitalization: Knowing what to do and what
    traps to avoid
  • Participating in research: What to consider
  • Extending your health philosophy to the world outside the
    medical system

Additional skills are useful when you are not the patient.

  • Parenting a child with medical challenges and dealing with
  • Helping a mentally competent family member or friend
  • Assuming the responsibilities of decision-making for a parent
    or other adult who cannot make their own decisions
My perspective on patient advocacy is built on my experiences and
those of others filtered through the background of my medical
education and brief time as a doctor at a U.S. teaching hospital.
My approach to teaching is based on helping individuals, giving
workshops, and talking to people facing their own health challenges.
Food for the Smart Patient teaches advocacy skills in this sequence of
12 steps and provides checklists and other materials to help you on
your medical journey.
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