Hello from Talia’s Voice (where we so wish Talia’s own cheerful voice could issue this greeting). We are eager to share with you about our growing organization and the work we are doing, and feel incredibly appreciative to those of you who make this work possible through your support and contributions. Medical care affects every one of us, and we can not bring changes to the system without you.
We have spent this past year networking with leaders in the field of patient safety and medical harm. We are pleased to report that there really are some smart, caring, and committed people working to improve patient safety. They have made safe health care their mission (even without having experienced a death like Talia’s), and that’s the bright spot for us. We’ve been getting to know each other and figuring out ways to collaborate to change the culture in medicine.
We are now working especially closely with the Collaborative for Accountability and Improvement, an organization that draws on experts from all over the U.S. We sit on four CAI committees, which cover patient/family advocacy, research, policy, and best practices. We have become passionate about Communication Resolution Programs, or CRPs, which we believe have the potential to change the culture within hospitals in ways that will make them safer and more ethical.
In other news, we look forward to presenting this at the ASBH conference, the biggest Bioethics and Humanities gathering in the country; and at the U.S. News and World Report Healthcare of Tomorrow Forum as part of a keynote panel. We are also involved with a team from Stanford and the University of Washington who are developing a qualitative research study that will look at long-term harm arising from medical error. We have been startled to discover how little research there is on the affects of harm to patients and families, and understanding that impact is a crucial step in creating a culture of safety—we can’t solve a problem if we don’t even know what that problem is or consists of.
And of course, we continue to speak publicly, with Talia always at the heart of every ounce of work we do. We attended the Northwest Patient Safety Conference in Seattle in May 2019. We were grateful for the opportunity to help plan the conference. Our presentations, in three different venues there, were very well received, and we were amazed by how many people came up to talk to us (often in tears) about Talia’s death, and to thank us for our work. This is always very humbling and moving—it helps us know that our contribution is valued, that the work we are doing matters.
Finally, there are some exciting internal changes within our organization. Three of our Board members finished their terms but will stay with us on the Stewardship Council. Thank you to Rita Radostitz, Elizabeth Reis, and Deborah Fuerth. Naomi Kirtner, Talia’s Mama and co-founder, will join the board, along with Sharon Rudnick, Andy Gitelson and Kelly Menachemson, all of whom bring a wealth of experience with non-profits and fundraising. Leslie Kean, MD, PHD, will also join the Board. Dr. Kean is on faculty at Harvard where she is Director of the Stem Cell Transplant Center, and helped conceptualize Talia’s Voice from the beginning. We hope you will look each of them up on our website to see what a diverse and dynamic team we’ve put together.
Thank you for your commitment to the work we are doing. We will keep you updated about our various projects and our progress. Two years ago we gave our first public talk about Talia at Marin General Hospital. We’ve come a long way since then, and have even further to go before we know hospitals are safe for people like our beloved Talia, and you.
Jeff and Naomi