One mom's DIY plan for improving health care: Why patients can't afford patience

Hala Durrah’s 11-year-old daughter has survived two liver transplants and a bout with lymphoma. Managing her medical affairs was all-consuming for Durrah, who, as a patient advocate at Anne Arundel Medical Center in Maryland, draws on her experience to help other families survive their own medical odysseys.

“I understand doctors are overworked and change is slow,” she said. “But my urgency [to improve health care] is daily.”


Durrah: This is an opportunity to invite patients and families to the table, and say, "How can we make this better together?" I think only, in doing, that will we make it better together.

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Interviewer: So we just heard from Malcolm Gladwell about the importance of urgency or having a sense of urgency in disruptive innovation and the importance of creating work environments that allow for that sense of urgency. So tell me about, as a patient advocate, the sense of urgency that patients feel today.

Durrah: Patients and families urgently want to be partners in health care. The system has changed and continues to change and it becomes more and more complex. So as patients and families, we want to be involved in those decisions that affect us directly. The only way we can do that is to share our voices, and partner with our health care team.

Interviewer: Well tell me about your particular experience. What got you involved in sort of this advocacy role?

Durrah: I got involved in our local hospital. I was invited to serve on a committee for a hospitality house that was being built next to the hospital for patients who may be traveling from a far distance and their families would like to be close by, to that hospital. The reason I was recruited to serve on that committee is my family and I have lived in those types of homes over the years during various stages of my daughter's medical care. So that was my first entry point, so to speak, to the patient-family care center world.

Since then I feel like this is where my heart is, where my passion is, I want to be a voice for those who don't have a voice and I want to be an equal partner. I want to be able to share constructive input so that we can work together to make it better.

Interviewer: Give me some examples of ways though, in which, the hospital itself is hearing you, taking your advice and translating that into change.

Durrah: We work directly with senior leadership as patient family advisors. We have the Chief Nursing Officer, the Chief Operating Officer, Senior Director of Women and Children Services at our meetings. We interact with them and they'll come up with a communication piece they want to put out. They'll say, "Do you think this really communicates well to patients and families?" And we may look at it and say, "No, it actually doesn't." We'll make changes and those changes actually will be implemented.

We also came up recently with a strategy to shadow nurses on a mother-baby unit to see how they do patient-family center care initiatives like bedside shift report. Are they involving the patients and families and what suggestions could we give to them to make it better or what suggestions can we give to them to say, "Hey, this is something you should be doing." They do take the input and they do say, "Okay, let's work together to make this better."

Is it always easy? Do we always agree? No, absolutely not. Does everything we say come to fruition? Not always. But we're working, we're working together and I think the first step is to get us all at the table and we are at the table. The first step is to have that supportive environment and then you move forward.

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By: Kirsten Stewart

Kirsten Stewart is a Senior Writer for University of Utah Health Sciences.