Patient advocate Morgan Gleason: ‘Listen to the patient’

Had Morgan Gleason really thought about how many people might eventually see her on a self-described “horrible hair day,” the 16-year-old patient advocate — now an in-demand public-speaker — admits she might not have let her mom record as she vented frustrations from her Florida hospital bed last January. Tens of thousands of social media followers throughout the country, though, would have missed out on what has become one of the year’s most recognized and respected voices for patient- and family-centered care.

Gleason’s wisdom on how patients should be treated by the medical profession extends well beyond her years. She empowers frustrated patients of all ages to speak up for their needs, and has captured the attention and admiration of caregivers nationwide through her videos, blog and speaking engagements on the patient experience. On Tuesday, she delivered the keynote address at Christiana Care’s 12th annual Focus on Excellence Awards Ceremony at the John H. Ammon Medical Education Center, telling the audience, “It makes me really happy to see a hospital that cares about improving the patient experience.”

This young lady knows more than anyone should about being a hospital patient. Four and a half years ago she was diagnosed with the rare systemic autoimmune disease juvenile dermatomyositis, a vascular condition that causes weak, painful muscles, skin rash, fatigue and fevers. An active child, who was an accomplished tumbler prior to diagnosis, Morgan now spends her teen years hospitalized monthly for infusions. She takes 21 pills every day and gets weekly injections. She has had five spinal taps and more than 250 vials of blood drawn since 2010. Twelve doctors are involved in her care.

Last year, she was hospitalized twice for meningitis, and it was during one of those stays that she finally had enough being awakened through the night and early morning by the incessant alarms and a parade of medical students, residents and doctors. She was tired of being spoken “about,” not “to,” simply because she is a minor. She took her plea to social media.

Her mother, Amy, a nurse and creator of an app to link patients and families with information about rare illnesses and track their disease — intended the video only for family and friends. It quickly racked up thousands of YouTube views in early 2014, leading to stories in both the Huffington Post and Forbes magazine. Forbes contributor ePatient Dave (Dave deBronkart, another well-known online patient advocate) wrote, “This 15-year-old absolutely nails what ‘Patient Centered’ is — and isn’t.”

Following the positive response to the first monologue, “I am a patient and I need to be heard,” the mother/daughter duo set out to produce a second, equally thought-provoking message titled “Why does everything beep?” That video expresses Gleason’s frustration with IV pumps, which, she contends, are not patient-centered.

Care providers are taking note. Last year Gleason headlined at Cleveland Clinic’s Patient Experience Summit, Stanford Medical School’s Medicine X Conference and Dignity Health’s Patient Experience Conference. This week’s talk at Christiana Care kicks off her 2015 speaking lineup.

Many would think one so frustrated with her hospital experiences would want to venture as far away from health care as possible. Yet Gleason announced to a delighted Delaware audience on Tuesday that she actually plans to pursue a career in the field, likely as a nurse anesthetist or nurse practitioner.

“I want to change the health care system,” she said.

The hundreds who attended Christiana Care’s Focus on Excellence ceremony this week believe this teenage voice for patients everywhere will help to do just that.

Q & A with patient advocate Morgan Gleason

Following her presentation, Gleason sat down with Edmondo Robinson, M.D., MBA, senior vice president and executive director, Wilmington Campus, and associate chief medical officer, to share further insight on how medical professionals can improve the patient experience.

Dr. Robinson: If you could fix one thing to improve the patient care experience, what would it be?

Gleason: Listen to the patient. They are the center of care. Things shouldn’t be done on the doctor’s schedule, but on the patient’s, so the patient can rest and heal. It’s easy for patients to be brushed off, but listening to their preferences is very important. If you don’t listen, then how do you know what will make their experience better?

Dr. Robinson:  Please share an example of an excellent care experience that stands out.

Gleason: One very positive memory for me was when I was suffering from a light-sensitive headache made worse by the light on my IV pole. My nurse came up with the idea of putting a blanket over the pole to block the light. That simple thing showed she cared about me as a patient.

Dr. Robinson: I understand many who view your videos contact you. Is there a common theme to their comments?

Gleason:  Yes, and it is a very strong common theme. Every person who contacts me thanks me for giving patients a voice. Patients feel like they haven’t been listened to.

Dr. Robinson: What makes you keep going, producing videos, blogging, tweeting and doing these speaking engagements?

Gleason: I want people to know they are not alone. It’s OK to stand up and put your foot down to what the doctor is saying. It’s ok to choose the options that fit best for your lifestyle. Everybody I hear from inspires me. I keep going because I want to change the system; to make it better.

Dr. Robinson: Do you have a message for those of us at Christiana Care to help us on our journey on The Christiana Care Way?

Gleason: Always, always, always ask what your patient wants. Never assume. Treat your patient as you would a family member (one you like!). And never make patients feel that their concerns or requests are trivial. You go to school to learn how to be caregivers; we don’t go to patient school.

Photo gallery: 12th annual Focus on Excellence Awards

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