Category: Data

It takes a village

Well, a team of doctors.

Reflecting on this whole week, we have had meetings with the following departments and doctor:

  • Stanford Ear Nose Throat (ENT): the tracheotomy tube to assist with breathing, and to take a biopsy of the throat.
  • Stanford Radiology: MRI and PET CT of the throat area
  • Stanford Blood and Marrow Transplant (BMT): to discuss graft vs. host disease and effects of transplant on relapse
  • Stanford Hematology Oncology: to discuss options for Leukemia growth in throat area and treatment options- radiation, chemo, do nothing
  • Stanford Radiation Oncology: to discuss options for radiation of the throat area
  • Stanford Palliative Care: to discuss ways to continue some sort of normal lifestyle while undergoing treatment
  • City of Hope Oncology: In addition, since Radiation Oncology is a new addition, we needed to set up a new patient appointment even though we have been at Stanford for over a year. Radiation Oncology requested the DVH – Dosage Volume Histogram of past radiation treatments. This did not exist in the records City of Hope sent to Stanford last year. I have used Grand Rounds and Picnic Health to help us gather medical records in the past, and they did not have it either. It appears that Radiation Oncology has its own data system and even though a full medical history has been requested in the past, their records were not included. Calling the Medical Records office at City of Hope took too long, so I contacted our oncologist directly who helped us get records over to Stanford. Thank you City of Hope!

I spent about 2 hours one morning coordinating the appointments around other commitments, optimizing the timing of each one. Palliative Care is scheduled after the meetings with Hematology and BMT. And Radiation Oncology is scheduled last since that is a final resort and we just want that team on standby in case we want to go down that path. Now on to gathering more data, more debugging, and finding a solution!

Great labs!

Another beautiful day at Stanford Cancer Center. 8.4 WBC, 12.2 Hemoglobin, 158 platelets! Hopefully gone forever are the days we anxiously await lab results to tell us if we have to stay for a blood transfusion or platelet transfusion. Those Leukemia blasts are staying away. On to side effect management of GVHD and neuropathy. Another beast in its own right, but experimenting different ways to pair food, exercises, vitamins, herbs, etc, with pills to get back to normal. Still crazy impressed with my mom’s ability to make delicious means without working tear ducts (no crying when cutting onions!) or saliva glands or taste buds! Ha. Resilience FTW. Beating Leukemia.


Healthcare Interoperability

This is the current state of healthcare interoperability. I wrote my mom’s medical chronology to our new oncologist. The medical release form for City of Hope got lost somewhere so Stanford still does not have her records from City of Hope. The records sent from UCI were not as comprehensive as they need. I was told by the nurse that they don’t have any records they can use. Also, a pile of faxed records is oftentimes too difficult to consume that it’s easier for me to just tell new medical teams what happened. This is not ok. Not everyone has a patient advocate. There needs to be a better way for busy, brilliant doctors to consume large amounts of patient healthcare data. This is why I care so much about healthcare data interoperability.