Broken Trust: A Stanford Research Patient's Point of View

Last month, my daughter and I learned that the President of Stanford resigned as the result of an investigation that found there was data manipulation occurring as part of research studies in his lab and other labs under his purview. 

 

“Many praised Dr. Tessier-Lavigne’s intellectual acuity and commitment to scientific rigor, but many also described a lab culture that incentivized good results and successful experiments. They felt that the lab, and Dr. Tessier-Lavigne, ’tended to reward the ‘winners’ (that is, postdocs who could generate favorable results) and marginalize or diminish the ’losers’ (that is, postdocs who were unable or struggled to generate such data),’ the report noted.

 

“The committee determined that Dr. Tessier-Lavigne did not desire this dynamic, but that it may have contributed to the high rate of data manipulation that came out of his labs.”

 

https://www.nytimes.com/2023/07/19/science/tessier-lavigne-resignation-research.html (https://www.nytimes.com/2023/07/19/science/tessier-lavigne-resignation-research.html)

 

My daughter has been receiving care from Stanford since December 2016 for a rare disease, moyamoya. Over the past seven years, she has received the best and worst the institution has to offer. 

 

She received a lifesaving brain surgery, the laparoscopic pedicled omental bypass in 2016 after a failed surgery at another institution. My daughter might not be here today without the surgery. She also experienced a post-surgical hardware infection that was dismissed by her surgeon for six years. It spread throughout her bypass. Six years later she is in palliative care. 

 

My daughter is part of a research study that looked at the efficacy and safety of this surgery. The study details the rate of complications and long-term surgical results for twenty-one patients over a ten-year period from 2012 to 2022. President Tessiere-Lavigne did not coauthor my daughter’s study, but he presided over the researchers who authored her study for the duration of her treatment. 

 

I discovered the published study online in February. I was surprised and disconcerted to find major discrepancies in the report. The report omitted a large granuloma that developed in her bypass. This was a major complication for which she was hospitalized multiple times. She had surgery at Stanford to remove the growth in 2018. 

 

The study also reports that she did not experience post-surgical TIAs. My daughter was treated by Stanford with medication to raise her blood pressure at least two times over a two-year period, because she continued to experience breakthrough TIAs. These are two of six discrepancies that I noted. 

 

I notified the leadership at Stanford (CEO of Stanford Healthcare, Dean of Medicine at Stanford University, and Chief of Neurosurgery) of the discrepancies in early February. I asked that the study be updated to accurately report her information. I also requested they form an objective team to reach back to all omental bypass patients and evaluate if their patient information was presented accurately. They partially corrected the study on July 25, 2023, one week after the story broke about the President. 

Stanford had a prime opportunity to demonstrate a recommitment to research accuracy and patient care but instead made a decision NOT to update the study to include mention of the most serious complication, a chronic post-surgical infection. 

 

My daughter and I have made a conscious effort over the last seven years not to second guess our medical choices. Since this article broke, we cannot stop second guessing the last seven years. 

 

Would her surgeon have debated the diagnosis of infection as hard and as long if there were not a negative consequence to acknowledging it? 

 

Would he have removed all of her hardware in 2017 as the Georgetown infectious disease specialist recommended? 

 

Would he have been as quick to dismiss the positive cultures for bacteria in 2017 as transfer? 

 

Would she have been treated with long term IV antibiotics sooner?

 

Would she have been able to clear the infection before it spread to an area that antibiotics can’t treat? 

 

What could her life have looked like the last six years without the presence of an infection? 

 

Would she be a palliative care patient if she had not been part of a research group? 

 

The “what ifs” are haunting us, but what haunts us more is the conclusion that was made in the study. The study concludes that the surgery is safe and effective. If the data that has been used to support that conclusion is incomplete and inaccurate, can the conclusion be trusted? 

 

Stanford is a leading contributor for moyamoya research. Patients make decisions based on their studies. Doctors make decisions based on their studies. When one study is flawed, it raises questions about other studies. When multiple studies are flawed, it raises questions about the entire body of research. 

 

My heart is heavy thinking about what this could mean for the moyamoya community and other disease groups that depend on their medical research. Sound research will be tainted by flawed research. 

 

Patient trust has been broken. 

Corrigendum to: “Ten-Year Experience With Laparoscopic Pedicled Omental Flap for Cerebral Revascularization in Patients With Moyamoya Disease” J Pediatr Surg 57 (2022) 710–715 - Journal of Pediatric Surgery (jpedsurg.org)