“Thanks for this amazing project! At Brigham and Women’s hospital in Boston, Mass General Hospital, and Dana-Farber Cancer Institute, I was able to get my clinical data back in all cases and the doctors were fantastic. While the format was sometimes a pain (20+ CDs for MRIs) and hundreds of scanned pages, I did get the clinical data and it came quick (I could wait and they would burn CDs at the hospital).
However, for “non-clinical” data it is another story. The definition of clinical data and designated record set is not clear at all. For example, I don’t have access to my oncopanel sequencing results, even though all my doctors do and all brain tumor patients have this “research” test done at these hospitals. The results are extremely useful, and are used by doctors to make treatment suggestions, decisions, and look at clinical trials for specific mutations. My doctors are supportive and are trying to see what can be done for improving the policies.
In a similar vein, I’m still awaiting access to my whole genome, which has been already sequenced for research and my doctors + university (MIT) can see/use this data, but as a patient, I cannot. It’s been in legal discussions for the last 3 months and slowly making progress, as the policies are unclear. More meetings to happen soon and fingers crossed I’ll be able to access the same data (generated by my brain tumor) that my doctors can see.
Why can’t there be a “share” button at the hospital? One to allow patients to control their own data, to share with themselves, medical research, or others if they prefer. A fascinating paper, and likely you already have seen this, is here on if genetic data can be considered under the DRS, meaning patients should legally have access to their own sequence data: http://www.ncbi.nlm.nih.gov/pubmed/25255365 I’ve also written more of my experience and thoughts on Open APIs for healthcare in a recent proposal comment here: http://stevenkeating.info/Steven_Keating_CMS-3310-P_Comment_05_29_2015.pdf
Thank you again for this effort and here’s to enabling patients as partners in their own care!”