The Making of a Patient Advocate

When his wife suddenly developed trigeminal neuralgia, the author took it upon himself to learn the science and regulations to raise awareness and help others facing complex chronic pain conditions.

The year is 1996, near Washington, DC. My wife has gone to a dentist to evaluate a severe toothache. A root canal doesn’t find a visible abscess but the ache in her face spreads and intensifies. Soon, she has deep, throbbing pain behind her eye with achiness along the opposite jaw. The endodontist has no solution, noting, “This isn’t an abscess, but I don’t know what it is.”

A year and six doctors later, a neurologist tells us, “I think she has a rare neurological disorder called trigeminal neuralgia. I don’t treat this sort of thing. But here’s a point of contact for a patient support group that may be able to help.” He hands us a scrap of paper with a phone number.

Later that month, we drive to a local hospital to attend a meeting of the US Trigeminal Neuralgia Association (TNA), now called the Facial Pain Association. Claire Patterson – founder and president of the Association – is giving a presentation to about 15 people. The small audience isn’t surprising when we learn the estimated incidence of this disorder: only 12 to 20 patients per 100,000 population, according to NIH’s National Institute of Neurological Disorders and Stroke and the National Organization for Rare Disorders. Thousands of other rare or “orphan” syndromes, diseases and disorders such as Ehlers Danlos Syndrome, CRPS/RSD, or Psoriatic Arthritis have similar statistics, many of which cause severe chronic pain.

During Ms. Patterson’s Q&A, I raise my hand for a question: “What is the association doing to increase your visibility?”

A year later, I find myself serving as a board member for TNA and as its webmaster/core writer. I also began moderating an online bulletin board for patients and family members. In the 6 years that followed, the number of search engine “hits” for the term “trigeminal neuralgia” expanded from 3,600 to over 1.2 million. While I cannot take sole credit, I am proud to have helped create some of that increased visibility—and to have launched a third career as a volunteer to pain patient communities like those affiliated with TNA.

Today, I consider myself a patient advocate, working to balance narratives on public policy for the treatment of both chronic and acute pain.

Together, patient advocates work to improve communication and pain awareness among individuals, their healthcare providers, and policymakers. (Image: iStock)

What Do Patient Advocates Do?

In my view, patient advocates are intermediaries. We inform, facilitate, and moderate between patients and others (often healthcare providers). We assist individuals in understanding “doctor-speak” and teach them how to ask questions that promote good clinician-patient relationships and improve outcomes. Sometimes, we referee family conflict. Increasingly on issues of pain, we speak and write to policymakers on behalf of individuals who are being mistreated, abused, or deserted because of their complex chronic conditions. We try to speak truth to power and to help patients do the same.

It’s not accidental that I got involved in advocacy as a “technically trained non-clinician.” My degrees are in engineering and I retired after military and civilian careers as a technology analyst and data miner in defense aerospace. Very few clinicians have the time or the communication skills to participate in advocacy efforts while also earning a living. In my experience, many are discouraged by their training from interacting with patients via electronic media—a growing subset of “telemedicine” -- and some are phobic about being sued for giving advice to patients via email. So non-doctors like me – who have taken time to learn the science and the regulations – jump in to help fill the gaps.

There is no one-size-fits-all medical patient or pain therapy. Just the same, no single profile describes all patient advocates. Some individuals become advocates because they can’t find anyone else to provide authoritative information or community support for their particular disorders. A few retired clinicians offer their expertise as advocates, although few medical professionals are trained as writers or facilitators – and both skills are needed in advocacy. Most writers learn by doing. I was trained to write for and present to military policymakers who managed billions of dollars in defense acquisition programs.

Government groups are mostly focused on research funding, not directly on helping people. A few large organizations serve as are active supporters of patients (eg, US Pain Foundation, International Pain Foundation, International Association for the Study of Pain) but they lack sustained funding which sometimes limits their impact.

Online social communities have become advocates’ “home base” for providing support and information to those seeking details and/or help in relieving their pain conditions. Since many individuals living with chronic pain find themselves socially isolated or physically restricted to their homes, if not their beds, these social platforms allow them to connect in real time to strangers who might become friends.

What Skills Do Patient Advocates Need?

To be effective – and ultimately safe for those who act on our advice – several skillsets and attitudes are needed. If you want to get involved in patient advocacy, below are a few strategies I have picked up over the years

  • Listen with precision and respond with courtesy. Advocacy is not about stroking our own egos but rather being there for others in need. Some patients may feel polarized or alienated by past bad experiences with doctors or the overall healthcare system and take out their anger or desperation in social media or support groups. It is important to avoid getting caught up in this negative spiral and to maintain a supportive role that guides patients toward ways they can make a positive difference for themselves and others.
  • Read with understanding – and read a lot. Patients often come to advocates or advocacy groups for advice on what to do in a certain situation. If you don’t know, then say so as kindly as possible. As non-medical authorities, advocates must rely on the published work of others who are better qualified. In this regard, we must read their literature on the latest pain conditions and treatment insights. As you’re getting started, access to a medical dictionary and a database such as PubMed is a must. Google and Google Scholar searches will often take you to websites of major medical centers like Mayo Clinics, Johns Hopkins, or Massachusetts General Hospital.
  • Seek out the evidence. As you read and research, remember that there is no substitute for clinical evidence that is verified independently. While anecdotes may be interesting, they are the weakest form of evidence and are frequently used to promote “cures” which have no scientific or medical backing. Pay attention to who conducts the studies or writes the papers you read and which organizations they represent. Avoid generalizing from a sample of one—look for several articles on similar subjects.
  • Build your network. “You are not alone” is a message of enormous power. This is as true for you as an advocate as it is for people in pain. Seek out and develop relationships with academics and authors whose work you find compelling.
  • Leave politics at the door. Pain should not be political, except in the sense that advocacy must be pursued to change the minds of government leaders when bad policy is the problem in need of solutions.
  • Know your role. Most important of all, always remind your readers/followers that you are not a doctor and not able to offer professional medical advice. Patients should always speak to their healthcare provider(s) to obtain official diagnoses - before trying any proposed treatment regimen.

In all dimensions of patient advocacy, remember a fundamental reality: there will always be more work than you can do alone. Set limits when you need to and try to promote the empowerment and engagement of others. You will need colleagues as much as you need followers. That being said, you may find that as you work with people who struggle with health issues, you will get very validating feedback. In the 23 years I’ve supported individuals with trigeminal patients online, I’ve interacted with tens of thousands and formed lasting friendships. It’s very rewarding to turn your own or another’s pain into purpose and constructive action.


Updated on: 02/06/20
Continue Reading:
My Migraine Journey to Patient Advocacy