Engage: Blog

Terrie Cowley | Mar 2013 | 0 COMMENT(S)

Trust.  For patients and family members to engage in any aspect of healthcare, trust in the people engaging them is critical.  Patients and family members must trust that their time and effort partnering with clinicians, researchers, hospitals, government agencies and even patient advocacy groups will provide real answers to their questions and real solutions to their health problems. The promise that our engagement will ultimately result in better care for us can sometimes feel empty, and when the engagement doesn’t yield any fruitful outcomes, trust is compromised or even destroyed.

As a TMJ patient and president and co-founder of The TMJ Association, a patient advocacy organization, I’ve watched as engaged patients have openly shared their information, experiences, and perspectives.  That can’t help but lead to true progress in our knowledge and understanding of a condition that has devastated the lives of many.  Thanks to researchers and government officials who listened to patient experiences, we know more about Temporomandibular Disorders (TMD) (frequently referred to as TMJ) and their comorbid conditions than ever before. Recent scientific advances have demonstrated that for many, TMD is a complex disease mediated by genes, sex, age and epigenetics and that TMD is part of a cluster of pain conditions that predominately or solely affect women. This is truly a “game changer” in that this information debunks the myth that TMJ is all about teeth and jaws and treatment should be focused on “fixing” those.

However, information given to us by patients tells us that the ones treating them aren’t reading or heeding the science. Professionals continue to treat the millions of TMJ patients – 90 percent of whom are women in their childbearing years – in the same old way. There are many professional groups, each treating the patient based on differing beliefs. We call this TMJ LOTTO. They may get better because of treatment, in spite of treatment, be unaffected or become worse.  This chaos and confusion results in what one patient wrote in an e-mail to me this week. I don’t know who to trust or believe anymore.

In over twenty years we have personally communicated with more than one hundred thousand people.  Their stories are heart-wrenching, but all have the same center:  No one knows how to help me, or seems interested in solving this problem. In the absence of scientifically based treatments, people are served hit or miss, trial and error treatments, and sent on endless referrals. There are over 50 treatments, not including various surgical procedures and an array of medications that are prescribed to TMJ patients. A 1993 study found that 32 billion dollars was spent annually on these scientifically unproven treatments. In 2009, the NIH spent 46 cents per TMJ patient on research. The result is frustratingly inadequate help for TMJ patients and huge costs to them, our health care system and society at large.

Trust is a challenge even for those of us who are trying to advocate for these patients, especially when our collective efforts don’t make life better. It’s difficult to return to these patients time and again for involvement in studies, registries, letter-writing campaigns or fundraising when their hopes have been dashed before, their trust betrayed and things remain as they have always been.

Women suffering from pain conditions face gender bias and their pain is perceived to originate from or propagated by mental illness. The husband of a woman in New Jersey told me that his wife had 11 jaw surgeries, several jaw implants and was in excruciating pain. He and his wife visited her oral surgeon who told him, “There is nothing wrong with your wife that a good shrink can’t cure.” When the woman and her husband got home he asked her, “He’s the expert, who should I believe–you or him?” She then went into the bedroom and shot herself. There is nowhere to turn when there is no one you trust will take you seriously. The costs to patients go beyond dollars. They lose their dreams and hopes of careers, of a family, of a quality life and even life itself.

There is no lack of patient and family voices expressing their needs and interests.  There is an endless supply of people with TMJ willing to engage researchers, clinicians, and funding agencies.  But they need partners they can trust. They need some evidence of productive partnership, and someone to make good on the promise that engagement can make a difference in their lives.  When researchers, doctors, and government officials really listen, great things can happen.  But when they don’t, something more than progress is destroyed – trust.