After husband's death, former Lawrence resident organizes patient advocacy group and its first summit in Kansas City
- on September 13, 2012
For too long, Regina Holliday believes patient input has been an afterthought in health policy.
She’s working to change that and has helped organize a grass-roots organization called “Partnership with Patients.” The group is hosting its first summit Sept. 21-23 in Kansas City, Mo.
Holliday, 40, of Washington, D.C., and formerly of Lawrence, became a patient rights advocate after her husband, Fred Holliday II, died at age 39 from kidney cancer.
“It was a nightmare,” she said, of getting access to his medical records.
She said that at one point her husband waited for six hours in excruciating pain while a hospital tried to get records of his tests and treatments from another hospital. She had asked for his records before he was transferred for a second opinion but was denied access. She was told that copies of his records would cost 73 cents per page and would be available after a 21-day wait. That would have been May 9, 2009.
He died June 17, 2009.
“It was just so bad and so horrible. I thought, ‘I’ve got to do something to fix the system because this is wrong. You don’t just do this to people when they are sick and hurting already.’” she said.
Holliday began by painting murals about medical record access, and how it’s important to get information quickly. Then, she testified before Congressional leaders about electronic medical records.
In April 2011, Centers for Medicare and Medicaid Services kicked off an initiative called "Partnership for Patients" with the goal to improve quality of care and reduce hospital readmissions. Holliday spoke at a kickoff meeting, and then attended a meeting about a year later when patients were asked to participate. The problem, she said, was the patients really didn’t get much of an opportunity to speak. So, through social media, these patient advocates formed their own group.
“We don’t want to work for patients, but rather with patients,” she said.
The Kansas City conference begins Sept. 21 with “The Walking Gallery” at the Kansas City Marriott, 200 W. 12th St., where people — health care providers and patients — will display their stories. Those stories will be painted on the back of jackets that they will be wearing, and most of the paintings, if not all, will have been done by Holliday.
So far, she has painted 172 of the 192 jackets that have been done. She said the stories range from medical errors to data access. Others are about children living and dying because of the system.
“They often are visual, striking and sometimes disturbing,” she said. “The goal is to start the conversation about what it all means, and it’s usually personal.”
She expects about 30 people to participate in the gallery, including Dr. Ryan Neuhofel, a Lawrence family physician. She just finished his jacket, which depicts a doctor wanting to get back to old-fashioned medicine when doctors spent more time with patients and less time entering data into a complex system. Holliday used a “Little Golden Books” concept with the notion of a concierge.
“It’s really cool,” Neuhofel said. “I am passionate about helping my patients navigate the system, and I think that’s one of the most important roles of a primary care physician.”
Neuhofel also will be speaking about social media during the second day of the conference, which focuses on three topics: health information technology, patient quality and safety, and social media and the message.
On Sept. 23, Holliday said, they will be providing a patient speaker’s boot camp where patients will not only learn how to share their stories but will make a video to show how they feel. There also will be an “open space event” where everyone exchanges ideas and there’s no agenda.
Holliday said the mission of the summit is two-fold. First, it’s to work on strategies to grow its Partnership for Patients campaign.
“We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy,” she said.
Neuhofel said he decided to help sponsor the summit and become involved in the organization because he believes in the same causes and found Holliday to be inspirational.
“I kind of sympathized and agreed with a lot of the critiques and criticisms of the health care system. So we just kind of saw eye to eye on a lot of the different issues,” he said.
KANSAS CITY SUMMIT
The first “Partnership With Patients” summit will be Sept. 21-23 in Kansas City, Mo.
The summit’s mission is to help patients become better advocates, especially when it comes to health policy. It will focus on education, networking and partnership of patients, providers and vendors. The schedule includes:
• Friday, Sept. 21 — 6 p.m. to 8 p.m., Kansas City Marriott, 200 W. 12th St. The event will kickoff with “The Walking Gallery.” About 30 people will display their stories, which will be painted on the backs of their jackets.
• Saturday, Sept. 22 — 8 a.m. to 5 p.m., Cerner Educational Building, 6711 NE Birmingham Road. There will be sessions throughout the day that focus on three topics: health information technology, patient quality and safety, and social media and the message.
• Sunday, Sept. 23 — 9 a.m. to 2:45 p.m., Cerner building. There will be a patient speaker boot camp and a time to meet and share ideas without an agenda.
The cost ranges from $25 to $100. For more details about the event or to register, visit partnershipwithpatients.com.