How Rheumatologists Can Mobilize Patients as Advocates, Activists

Editor’s note: This is the first installment of a two-part series showing how a busy office-based practice can incorporate patient advocacy into its standard workflow. Part 1 outlines the reasons for advocacy and the benefits to both patients and doctors, then gives a quick-start outline to get you started. Part 2 will amplify the concepts explored in Part 1 and offer additional options and ideas to individualize this advocacy to meet your practice’s needs.

Rheumatologists are natural advocates for arthritis patients because we see firsthand the destructiveness of the illnesses we treat.
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The patients in my practice are frustrated; maybe your patients are, too. Have you asked them? Recent healthcare policies have left most patients with higher insurance premiums, larger bills for medicines, higher copays to cover office visits and diagnostic testing, and more treatment obstacles in the form of terse formulary restrictions and prior authorizations for almost everything. Patients often feel powerless to fight the system and advocate for themselves, and many of my patients felt they lacked a mechanism for addressing their concerns.

That’s where we came in.

Rheumatologists Are Natural Advocates

Rheumatologists are advocates for arthritis patients because we see firsthand the medical, psychological and social destructiveness of the illnesses we treat. We support the Arthritis Foundation, we complete disability forms, we submit prior authorization insurance forms, and we speak out in the community to advocate for those we treat. Advocacy is so important to the American College of Rheumatology (ACR) that it is on the banner menu of the ACR website. The ACR’s Simple Tasks Campaign is designed to promote awareness of arthritis-related issues and provide additional advocacy.

We want our patients to be political advocates, writing their insurance companies & their legislators.

Clearly, rheumatologists are at the vanguard of advocacy, but my colleagues express frustration and dismay that we are but a few voices in the din of competing choruses for political attention. Additionally, we are so busy with EMRs, Meaningful Use, Maintenance of Certification and a dozen other administrative obstacles (e.g., filling out those prior authorizations that stand in the way of patient treatment) that there is little time anymore for our advocacy efforts in a busy office practice.

Help Is Out There

In addition to the ACR, many organizations benefit our patients and promote advocacy, including the Arthritis Foundation, the Lupus Foundation of America, the Scleroderma Foundation, the Sjögren’s Syndrome Foundation, the Myositis Foundation and others. There are also general advocacy websites, such as Fail First Hurts, Creaky Joints and the Center for Medicare Advocacy, to name just a few. Despite the presence of these important groups, many patients feel they lack an effective mechanism for expressing their concerns and don’t feel they have a voice in the policy decisions that affect their health.

Lay the Foundation

How can we, as rheumatologists, mobilize the energy of our patients’ frustration and direct it toward changing the policies that work against them? How can we enlist the multitudes of suffering and scared patients to mobilize them into action? The answer is grassroots advocacy directed at patient activism.