We recently watched an excellent PBS Masterpiece Mystery series called Unforgotten, about historical murders that are discovered 20, 30, 40 years later. The program does an extraordinary job of showing the impact that these deaths have—over time—on all the survivors: parents, siblings, children of the deceased, as well as friends, lovers, and even the murderers themselves. We can attest to this ripple effect with regard to losses from medical errors. They don’t happen in a vacuum, and the effects last longer and are felt by many more people than the hospitals and medical personnel involved often assume. As patient advocates ourselves, we are part of a core group that is pushing for change, helping to bring patient voices front and center.
We’ve been thinking lately about the grit Talia always demonstrated in the face of the obstacles she encountered, medical and otherwise. She was our own small but mighty “little engine” who—like the caboose in the famous children’s story The Little Engine that Could—often beat the odds with her “I think I can” mentality. When Talia was in the hospital on life support after a series of medical errors in 2014, we and many, many others were holding our collective breaths, hoping against hope that she could somehow recover from the brain injury she suffered. Several of her friends sent letters and cards directly to the hospital where Talia lay in a coma. They expressed their desperate wish that Talia’s tenacity and sheer will power would pull her out of the woods, their words of encouragement relayed with urgency and a profound love for Talia.
We know we must have read these letters when the hospital staff delivered them to Talia’s room—we can see now that the envelopes are torn open after all, the corners bent; but in the fog and devastation of loss, we have no memory of receiving or reading a single one. Yet we “re”-discovered them last week. (Yes, it can take forever to build up the gumption to unpack a loved ones belongings after they die.) I began this newsletter describing the profound and often lifelong impact a death can have on a wide range of friends and family. Here’s how that can look: One of the letters we found in Talia’s hospital bag was from her college friend, Rebecca, who told Talia (with a raw tenderness that brought us to tears) what Talia meant to her, how admiring she was of Talia’s resiliency, and what a gift Talia’s kindness and support had been. Fast forward more than a decade to Rebecca who, now a professor of health policy herself, serves with us on the Board of Directors here at Talia’s Voice.
The research study that Talia’s Voice is sponsoring in Talia’s name—on the repercussions of medical error and harm (from the patient’s experience and point of view)—is also helping to elicit these truths, that the significance of harm is deep and lifelong. We are proud that we are giving a voice to patients—all patients, including those who are underserved and vulnerable—so that medical care and patient safety can be improved. Interviews with patients at the University of Washington in Seattle are ongoing and will begin soon at Johns Hopkins in Baltimore.
Our other work continues as we serve on advisory committees, review articles for medical journals, network, prepare to present at medical conferences and in classrooms, and participate ourselves in research projects that focus on patient safety (the most recent one involving using AI to teach physicians how to be direct and empathic towards patients after errors have occurred).
We once again helped to plan and run the Northwest Patient Safety Conference in October. The planning committee is a joint effort involving patient safety professionals from Oregon, Washington and British Columbia. Many of the keynote addresses and break-out sessions at the conference touched on the particular issues medicine faces in these unusual times.
Given that patients—regular folks like you and I—have raised enough money to fund two years of our research project (no small feat!), we initially believed that funding for the second two years from established governmental organizations was likely. 
But under this current administration, all who seek funding for medical research are scrambling in every direction to find financial support. So we are once again drawing on Talia’s grit, feeling a bit like The Little Engine That Could ourselves. We will keep reminding ourselves, “I think I can, I think I can, I think I can” while continuing to advocate for our research study and for the money we need to fully fund it. Like the little caboose, we’re determined—certain we’ll get there yet!
Wishing you all a meaningful holiday season.
Naomi and Jeff
Co-Founders, Talia’s Voice
