Participatory medicine advocate wants to change the conversation about the patient’s voice in health careOctober 21, 2016
Activist artist Regina Holliday spoke at Virginia Commonwealth University on Thursday Oct. 20. Part of the movement known as participatory medicine, Holliday believes that the patient should be a partner with their provider and both should work together as a team. She also argues for speedy access to digital medical records, has strong opinions about patient care and safety, and works generally for a louder patient voice in policymaking.
Holliday’s presentation, “The Patient Experience: Providing Quality Care and Safety,” was sponsored by the VCU Community Health Education Center, the MCV Auxiliary and VCU Health. Her moving and personal talk was followed by a painting demonstration. The painting she produced at the event are on display at The Community Health Education Center in the Gateway Building.
A mother and widow, Holliday’s art and work were shaped by her experiences during her husband’s treatments and hospitalizations. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to receive appropriate care during 11 weeks of continuous hospitalization at five facilities. She hopes her paintings are contributing to the national debate on health care reform and helping guide public policy.
One of her advocacy efforts is “The Walking Gallery.” The wearable art gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Some 300 individuals are part of the walking gallery. They attend medical conferences and meetings with the idea of changing minds and adding a patient voice to health care conversations. Several participants in "The Walking Gallery" attended her Richmond talk.
How would you define the role and responsibilities of a patient advocate?
The patient advocate can be defined in several ways. Sometimes this is an official staff member in a facility. They can operate as a patient navigator or customer service operative. In the best scenario, their job is to help the patient understand the processes and options in care within the facility. In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members.
Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection. In this case, the advocate may be a nurse, a doctor or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own medical decisions and review and negotiate medical bills.
Often the patient advocate is a close friend or family member who is not paid. This type of advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally, they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time.
Finally, there are patient advocates focused on policy. I am often classified among this category, although I prefer the term “patient activist.” A patient advocate focused on policy attends local, regional, state and federal meetings to provide a patient perspective in policy decisions.
This is by no means meant to be an exhaustive definition of a patient advocate. There are several resources, such as this one link, to help people learn more. (http://pacboard.org/2016/03/09/patient-advocacy-vs-medical-advocacy-view-from-the-pacb/ is one.)
You do a number of speaking engagements and presentations around the country. Are there some unifying themes — clear trends — you see, common ideas that many people share about their worries or attitudes toward health care? Patient safety? Patient advocacy?
I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH [The Health Information Technology for Economic and Clinical Health] legislation morph and change. Patient access to data at stage one had budding teeth and at stage two it got poor fitting dentures. I have watched the ACA become the law of the land, only to see constant steps to repeal it.
I watched the concept of patient engagement grow from a demand in small health care meetings, to a hashtag on Twitter (#patientsincluded), to the trend of conferences inviting patient speakers. I hoped that the next step was true partnership in decision-making and design. Sadly, of late I have often heard that “patient engagement” was out of fashion. We are now on to MIPS [Merit-Based Incentive Payment System] and MACRA [Medicare Access and CHIP Reauthorization Act of 2015] and massive ACO’s [Accountable Care Organizations]. I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see Value Based Care begin to roll out, as it addressed so many concerns of these advocates. I am saddened to hear how many attendees at conferences expound on their love for fee for service.
The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in health care. There are also amazing individuals, often on Twitter, (check out #hcldr), who will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately.
How would you describe your painting style and approach?
My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused. As a few people have told me over the years, “Your work is often sweet and disturbing at the same time.”
Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors and care providers?
“As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.”
As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul. It is a very nice feeling to be in the zone and at one with the cosmos. But the creation of art could feel like a nail ramming through my hand, and I would still create. I use art as a tool and the goal is to impact others.
It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article. It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts. To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.”
Of all the art you’ve made — your Walking Gallery, the murals — can you choose one piece and describe it and explain why it’s a piece that you especially want to share?
My favorite piece is “Are you alright?” In that painting, I captured my late husband Fred. He stares at me from that painting like he is still with me. Still alive on pigment-covered canvas. Still urging me to help him, a patient.
And every day I do exactly that.
A version of this article by Sue Robinson was published by University News.
“Are you alright?” — a 24” x 24” painting by Regina Holliday depicting the danger of infection when using a hospital tray table for food and bedding changes.
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