Every Patient Can Be an Advocate

by Dan Roberts

What do these six famous people have in common?

Al Gore

Photo of Malala Yousafzai
Malala Yousafzai

photo of Helen Keller
Helen Keller

Photo of John Walsh
John Walsh

Photo of Martin Luther King Junior
Martin Luther King Jr

photo of Michael J Fox
Michael J Fox

They are all different in many ways, but they each possess at least one characteristic which sets them apart. They have a strong sense of empathy, making it impossible for them to remain silent in the face of adversity. They all believe in something so personally important to them that they can do nothing less than speak out for the sake of others. They are advocates.

Anyone can be an advocate. Formal training is not required, but the title is usually justified by knowledge, experience, and passion. The cause could be as far-reaching as human rights, education, and poverty, or it could be as simple as speaking out about litter in the neighborhood. Advocacy is usually ignited by a significant personal experience, and then fueled by natural born empathy,

One of the most important causes is patient advocacy. That is, taking an active part in improving treatment and health care for people who cannot, or do not, always speak for themselves. Such advocacy can be directed by any caring individual toward one or all of four groups of people:

  • Medical providers
  • Community members
  • Family members and friends
  • Elected officials

Here are some suggestions about how a patient can best advocate within each group:

• Help professionals to be professional.
Provide them with trusted information and resources for distribution to patients.
• Volunteer for clinical trials.
Find trial information at clinical trials.gov and centerwatch.com.
Read What Is A Clinical Trial?
• Be an informed patient.
Sign up for newsletters from low vision organizations and media news alerts.
See links to trusted information about Eye Diseases and Conditions.

• Seek out speaking opportunities
Everyone has a story to tell, and it doesn’t have to be a Pulitzer prize winner.
• Participate in or initiate a fund-raiser
Whether it is for research or educational outreach, every dollar is important.
• Be an Internet scout for those who are unconnected
Many people still have no access to the Internet. Be a go-to source of information.
• Be an informed consumer
Get the best deals by reading customer reviews and business reports before making major purchases.
• Speak up about misleading advertising, and report consumer scams
Learn how by reading “Wolves in Sheep’s Clothing
• Speak out in favor of good efforts
One spoken compliment or thank you note can go far with vision care professionals and service providers.
• Donate generously but cautiously
Consult with Guidestar, Charity Watch, Charity Navigator, and other good watchdog agencies.
• Be a model patient
Show others how to live well with low vision by displaying positive actions, courage, and knowledge.

• Educate with empathy
Ignorance can best be eliminated with understanding and gentle teaching. Start with the “ABCs of Caring for the Visually Impaired
• Teach by example.
Don’t just talk about correct behavior, model it.
• Be honest
Communicate openly, but discriminately. Don’t dwell on the subject, but don’t hide it either.

• Keep up on legislation affecting the low vision community, then:
–Decide what is right, and stand up for it.
–Encourage other patients to express the low vision community’s needs and concerns to their legislators.
–Provide government officials with reasonable solutions, then offer to help carry them out.

Society needs advocates. Not everyone is able to take necessary action, due to lack of personal resources, physical or mental capabilities, finances, or human support. So others need to step in. And by doing so, such caring individuals not only offer a necessary gift, but they themselves reap the pleasures of accomplishment and purpose. Not everyone can be a Helen Keller or a Martin Luther King, but striving for their heights is a worthwhile effort.