Updates

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 at the ASBH conference in Pittsburgh in October, the biggest medical ethics and humanities gathering in the country, and as part of a keynote panel at the U.S. News & World Report “Healthcare of Tomorrow” conference in DC in November. 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
Co-Founders

Patient Safety Awareness Week March 2018

Posted on Mar 14, 2018 in Thinking | 2 comments

Patient Safety Awareness Week March 2018

Staying Strong  – Using Your Voice This week is National Patient Safety Week, March 11 – 18. Although we lost our daughter, Talia —an EDS zebra—due to reckless and negligent care, We find it difficult to feel cheerful about this kind of national awareness program. On the one hand, perhaps it does work as a reminder to medical providers that keeping patients safe is paramount. On the other hand, if doctors, nurses, and hospital personnel—the people in charge of our care—need to be reminded that keeping their patients safe is...

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Mike Baker Wins Prestigious 2018 Selden Ring Award

Posted on Feb 12, 2018 in Thinking, Uncategorized | 2 comments

Mike Baker Wins Prestigious 2018 Selden Ring Award

Our daughter, Talia, has been in the news twice in the last two days—first in the Seattle Times on a follow-up article by Mike Baker about our work here at Talia’s Voice, and today because he and fellow journalist Justin Mayo won the prestigious Selden Ring Award for their work in investigative journalism. We are thrilled for Mike, whose work shone a light in some very dark corners at Swedish Hospital (Cherry Hill). The negligence of the care Swedish did (and did not) provide meant Talia was robbed of her own life, and stolen from us forever....

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Talia’s Voice in the News

Posted on Feb 12, 2018 in Doing | 1 comment

Talia’s Voice in the News

On February 11, 2018, the annivesary of Talia’s airway occlusion and coma, Mike Baker of the Seattle Times published a story about the work we are doing here at Talia’s Voice. As Jeff and I relive the awful details in “real time” through flashbacks to 2014, we are reminded again of how important and necessary our work is. No matter how long it takes, we will work to change the culture in medicine, to make listening and communication values in and of themselves. Not only will this lead to compassionate care that feels better, but it will keep...

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In Healthcare, Race and Gender Still Make a Difference—and that’s not good news

Posted on Jan 14, 2018 in Thinking | 0 comments

In Healthcare, Race and Gender Still Make a Difference—and that’s not good news

We adopted two kids from Ethiopia eight years ago, a country rich in culture but very poor economically; a place where there is one doctor per about 48,000 people (as compared to here where there is one doctor per about 300 people). Up until a few years ago, that number was more like one in 100,000. Recognizing the need for better healthcare, Ethiopia expanded the number of medical schools in one fell swoop, opening 13 new ones in just a few years. While that has increased access somewhat, unfortunately the medical training doctors-to-be...

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Shout Out to Marin General Hospital

Posted on Nov 29, 2017 in Thinking | 2 comments

Shout Out to Marin General Hospital

While certain things in life are predictable, many are not.  Jeff and I mapped out, for example, our first two pregnancies and had our babies right on schedule. Graduate school for me, medical school for Jeff—these were steps we prepared and planned for in our lives. But other things came as surprises. We were not people who “always knew” we’d adopt, for example; yet that blessing in our lives has been especially lovely. And I never could have predicted I’d have a child die, much less that it would be due to medical negligence and that I’d...

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Second Opinions

Posted on Oct 27, 2017 in Thinking | 2 comments

Second Opinions

The article linked below is an egregious story about a woman whose medical care was handled terribly. The patient’s nurse practitioner misread a test result and neither of the physicians she was referred to caught the error. (Did they read the test results themselves, or just rely on the nurse practitioner’s interpretation?) The patient ended up with both breasts and her uterus removed unnecessarily before she, herself, discovered the mistake the providers had made. This Washington Post article raises all kinds of questions (i.e. who reviews...

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Tell Your Story (with a chance to win)

Posted on Oct 9, 2017 in Thinking | 0 comments

Tell Your Story (with a chance to win)

Talia’s Voice is already coming into contact with other non-profits that are working to improve the patient experience. Our particular focus at Talia’s Voice is on bringing about a culture change where communication and listening (at all levels of care!) are at the heart of medical practice. Just in the weeks since we started our work publicly, we’ve heard from individuals who want to “do something” and other organizations that already are. We just received an email from the directors of Patients’ View Institute, and they are looking...

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Apples and Or…egon Health and Science University Students

Posted on Oct 6, 2017 in Doing | 4 comments

Apples and Or…egon Health and Science University Students

It’s apple season in Oregon and the fruit is ripe for the picking—so many varieties, so much bounty! There is a range of flavor, size, color and crispness to choose from. Jeff and I spent Wednesday, October 4, interacting with medical students at OHSU, and, as with the season’s apples, appreciated the rich variety of ideas that came through their questions and reflections. We were looking forward to speaking with students and all of them were receptive to Talia’s story. It was apparent that Talia’s voice moved them. We found that medical...

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Oregon Health and Science University

Posted on Sep 28, 2017 in Doing | 2 comments

Oregon Health and Science University

On October 4, 2017, Dr. Jeff Goldenberg and Naomi Kirtner (Talia’s Voice founders) will be giving two presentations at Oregon Health and Science University (OHSU), where they will have the opportunity to speak with both 1st and 2nd year medical students, as well as to residents and faculty. Talia’s artwork will also be on display at the medical school, which always deepens the experience for those who are hearing about Talia’s life and death. We look forward to engaging with a range of people involved in the medical community when we head to...

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Talia’s Birthday

Posted on Sep 24, 2017 in Doing | 1 comment

Talia’s Birthday

Today, September 24th, is the birthday of our “unofficial” founder, Talia Goldenberg. She should be here celebrating her 27th birthday.  Instead, we spent the day celebrating the amazing person she was. Talia’s family gathered around a table of stuffed animal zebras–a gift from her aunt and which are the mascot for those who suffer from EDS (the disease Talia had).  Talia’s Papa baked cinnamon buns which she would have loved.  We ate them for her.  Each family member chose words or phrases they associated with...

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