Creating a platform for patient empowerment

While the kind of stroke O’Connor had does have a 80- to 90-percent recovery rate, she doesn’t even know when she had a stroke. It’s assumed she spent two days on the floor in her condo in January before concerned friends discovered her.

“From everything I’ve been told, if they didn’t find me when they did, I wouldn’t have been alive,” she said.

It was seeing the other patients in the halls of the rehabilitation area of Harborview Medical Center and the couple she shared a room with that prompted O’Connor to write a book.

O’Connor is no stranger to writing: She’s been a health-care journalist since the 1980s, writing for local publications and national nonprofits. She has published books on health care, including “The Buck Stops Nowhere: Why America’s Health Care is All Dollars and No Sense.”

She was also involved with other local groups, like the Madison Park Community Council (she had written opinion pieces on the state Route 520 bridge construction on its behalf for Madison Park Times). Most of this other work has stopped since the stroke, and for now, she’s focused on her own blog (oconnorreport.com) and this new project.

“I have no business being alive, and when that happens to you, you want to give something back,” she said. “The one gift I can give is writing, so I can tell [others’ stories].”

Sharing experiences

O’Connor’s passion in health care is for the consumers because their voice isn’t often heard. She’s writing the book to give people the permission and power to question the health-care system.

O’Connor had primary and supplemental insurance, a network of friends and advocate. But there are people who don’t have that. She decided she was in a unique position to write about this. With the blog and book, O’Connor hopes to provide answers about what people need to know and what kind of answers they deserve.

Through her experience, O’Connor learned about the importance of an advocate and a Life Alert system, but she also learned things about her own life. She saw the value of friendship and that people really want to make a difference.

O’Connor will use her own experience as the introduction for the book, but she wants to incorporate many stories, from people across the country with all types of health experiences. She wants to create a space where those stories are heard and shared.

She plans to take those interviews and weave them throughout the book or stand alone as anecdotes. In most cases, she won’t share names, locations or insurance companies, “because ultimately that doesn’t matter” — the experiences are the same, she said.

She’s including the experiences of health-care workers in the book, too. Doctors have seen the industry change with corporate interests taking over, she said. One retired doctor she interviewed felt cut off from his patients. 

O’Connor has interviewed about 10 people for this book so far, but over her career, she’s heard hundreds of stories. She is still looking for stories to include but is worried about being overwhelmed by stories.

“Since I’ve said I’m doing this, every person I talk to has a story,” she said.

People don’t often feel like they have a voice in health care, she said. O’Connor wants to create the space where their voice is heard and respected. “Or I’ll go to my grave trying,” she said. 

Sharing advice

She’s had experiences on both sides of the publishing industry, but O’Connor plans to publish this book independently. That gives her more freedom with her opinions, she said.

She’s also researching crowdfunding to help with some of those publishing costs. The book will have an editorial board, which will help with fact-checking, book structure and advice. O’Connor hopes to publish the book by the early part of next year.

In the meantime, she has already started publishing some stories and advice on her blog. (She will have a new website for the project, but for now, she’s posting to her current one.)

Margaret Stanley is one of the people on the book’s editorial board. Stanley was the first executive director of the Puget Sound Health Alliance and is the head of the Washington State Health Care Authority. She also has worked for various insurance agencies. Stanley wanted to help her friend by using her expertise to inform the book.

“I think it’s very important for people to understand the patient experience when you go through a health-care crisis like this,” she said. “I think this is always intriguing for people to read what it’s like to deal with the health-care system and the things you don’t think about.”

O’Connor writing the book is “exactly what I would expect of her,” Stanley said. “She’s a good writer, and she’s brought health-care issues up through her whole career.”

Because the industry is so vast, O’Connor has had to set parameters for this book. This one will likely cover the stories and advice for people who are insured. And the stories vary, from those who are self-insured, to those who have Medicare and its supplement.

“Just because you have health insurance doesn’t mean you aren’t going to get screwed,” she said.

O’Connor stresses that the book isn’t placing blame. There are great people industry-wide, but they’re just as stuck in the “out-of-control” system, she said.

There is potential for the project to evolve into a series of books, as there will always be more stories and more information to share.

Many of the stories she hears are heartbreaking, but “it’s what gives me courage,” O’Connor said. “I can’t change it, but I can sure as hell tell about their problem.”

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