Regina Holliday decided there were too many health care meetings with no patients represented. It was unacceptable to her, so she decided that would have to change.
A toy store employee and art teacher before her husband’s experience with kidney cancer turned her into a patient and caregiver activist, Regina now shares the podium with the likes of DHHS Secretary, Kathleen Sebelius and CMS Administrator, Don Berwick. When she’s not invited to speak, she invites herself, and sets up her easel to paint. As an artist and advocate, she is prolific and inspiring, but she is only one person with only one story.
So last month she brought together over 100 health care leaders and patients for The Walking Gallery. For weeks leading up to the event, Regina painted 62 jackets depicting patient stories. She didn’t charge a dime for these masterpieces. All she asked in exchange is that people wear the jackets – some were business blazers, others were white coats – at heath care conferences, policy meetings, clinical rounds, or wherever decisions are being made that affect patients. I proudly commissioned a jacket to depict the story of my friend, Near Miss Mom, and I will proudly wear it next time I represent the consumer voice at a table where childbearing women are underrepresented.
Because there are too many health care meetings with no mothers represented.
When Childbirth Connection convened over 100 health care leaders and maternity care stakeholders to define a common vision for high-quality, high-value care and draw up a blueprint to get there, we made sure childbearing women themselves were well represented. In fact, consumers and their advocates comprised one of our five stakeholder workgroups. We are certain that a very different vision and blueprint would have emerged if childbearing women had been shut out of the process or their contributions devalued.
With a robust blueprint in hand, the real work begins. And childbearing women don’t just need a seat at the table, they need seats at countless tables, and the skills and insights to be effective participants there. Whether the table is one where federal regulations are written, where research agendas are set, where community outreach campaigns are designed or where hospital improvement projects are planned, the ultimate stakeholders are the woman and her baby, and without their presence and effective participation, competing priorities and cultural inertia can too easily take over.
We’re not there yet. We don’t have women at every table, and where we do we need a greater diversity of women’s voices. Childbirth Connection represents mothers’ voices in many national and regional efforts – you’ll read about these over the coming months on this blog but here’s a list of our recent and ongoing activities – but we simply can’t be at every table.
Regina is doing her part to help. I was thrilled to see many jackets at The Walking Gallery depicting childbearing and motherhood. Like the one Regina painted for Lygeia Ricciardi, Consumer Advocate at the Office of the National Coordinator for Health IT, who had to fight hard just to have a natural birth. Here’s Lygeia’s story.
Or Matthew Browning, a nurse and innovator whose wife experienced severe preeclampsia and was asked by the medical team whose life they should save if they could only save one: his wife’s or his baby’s. Here’s Matthew’s story.
Or the unnamed mother whose healthcare team didn’t communicate that she was breastfeeding, and who was nearly given a radioactive medication that would have meant she would have to wean her baby immediately. Here’s her story.
Or Mary Ellen Mannix, a patient safety advocate whose newborn son, James, died as a result of medical errors. Here’s James’s story.
These stories will become a visible backdrop at each healthcare meeting where the jackets are worn, and they will change the conversation and ultimately shape policies and practices. Regina’s art is a powerful proxy for the millions of patient stories that remain untold, but we need to work toward true consumer participation and leadership.
What are you doing to include the consumer voice in your improvement efforts?
Photo credits: Regina Holliday (Flickr)