Being a patient partner means collaborating for better care

This column is the third in our series “The Patient's Voice,” developed with the National Partnership for Women & Families.

I am a patient partner with the primary care division of Essentia Health, a large, multifaceted integrated health system in Minnesota. On matters small and large, from the “talent” chosen to record voice mail greetings played when the practice is closed to the systems used to manage the intensive care waiting room, my opinion matters.

Until recently, I lived in Ely, Minn., a town of approximately 4,500 people. My clinicians there were in a practice that embodied patient- and family-centered care. The doctors and the staff took time to know me. They were attentive when my husband had gastrointestinal problems and my children came in for checkups. They understood our preferences and gave us space to make the choices that were best for us.

Most of all, they supported me when I needed them most, after my breast cancer diagnosis in 2006. My doctors were true partners in my decision to have a mastectomy, reconstructive surgery, and follow-up treatment. I always felt like I was their most important patient, and I always had the information I needed to make the best choices for myself and my family. I never felt as if I were alone in navigating the health care system.

If I hadn't already realized how lucky I was, it would have become clear when I met patients from other practices who were having very different experiences. They didn't have medical teams who connected with them, listened to them, or made them feel special. They suffered as a result. I often wished they could rely on the kind of practice that was helping me.

Several years later, the clinic administrator of my primary care facility told me that Essentia Health was looking for patient partners to help more of their practices implement patient- and family-centered principles. I was asked to join Essentia's Patient and Family Primary Care Advisory Council, and because of my earlier experiences and my interest in this area, it was an easy decision to say yes.

Essentia's patient partners offer advice on all aspects of the health care system. We've shared our views about how Essentia's website is structured and how to make the information there clearer and more accessible. We've told the doctors that we want to be roomed differently; we want to talk to them in our clothing, like regular people, when we arrive and before we change into our gowns for an exam.

We've told them that little things, like giving patients warm blankets when they are sitting in wheelchairs waiting for tests, can make a big difference. We've helped doctors find better ways to manage the patient questions they find stacked up at the end of each day by explaining that, in most cases, we are happy with e-mailed responses and fully understand they don't have time to call every patient.

Perhaps most significantly, I was on an adjunct patient- and family-centered care committee that helped Essentia improve management of visitors to its intensive care units. We told the staff that already-stressed family members were feeling very unwelcome, almost like prisoners, because they were penned off in the waiting room, forced to press a buzzer and then wait to be admitted to visit a loved one.

We said, “You can trust us to be quiet and appropriate when we get into the ICU.” In fact, that has proven to be the case. Essentia took our advice, giving families 24-hour access to ICU patients. Staff even put up signage that was more welcoming and less stern. Essentia also took the advice of the pediatric patient advisory council and allowed family members to stay with their children as the children were anesthetized, which calms both children and families, in turn improving outcomes.

These are commonsense measures to people like me, but Essentia didn't think to implement them systemwide until patients were given the chance to weigh in. It's fair to say that we've all learned as we've gone through this process. Essentia has learned to respect patient partners' time, to involve us in all levels of decision making, and to be less afraid that we will make unreasonable demands. The patient partners have learned how to be constructive and contribute effectively.

Being a patient partner lets me make a contribution to improving care. The process is respectful, and my input is considered. On the subject of health care, I have always had a lot to say. I am very glad that now someone is listening.