Thread by @VanAllenLab

Here, we partnered w/ cancer patients + friends @KDeutsch @adamhayden @CultPerfectMoms @CurrentIncurSci @stephanie_mul to liberate their cancer genomic data from clinical labs.

It was a struggle…

...but there’s hope & we have a plan! [1/n] @OSFramework osf.io/gupvq

(Updated my bio to have a disclosures link, including consulting for genomics labs which is relevant for this effort. Also pasting here: goo.gl/6kfq2E)

Patients have a right to their data, and HIPAA states that data (whether clinical, molecular, or anything in between) should come in a computable form.

hhs.gov/hipaa/for-prof… cc @EricTopol @TheLizArmy

Inspired by remarkable efforts like DNA.land @erlichya @TheLizArmy @GetMyHealthData & cancer data liberation attempts from Myriad (see: statnews.com/2016/05/19/myr… @statnews), we partnered w/ cancer patients to attempt access to their raw genomic data from labs

Here’s an example of the language needed to make the request that patients provided to labs

Responses from labs (academic or commercial) in this pilot were all over the place → many labs noted these patients were the first to attempt such requests, and most had no procedure in place to handle these requests

As a result, there were many open ?s: Who to contact? File formats? Mode of delivery? Many inconsistencies, even w/in same lab from different patients

However, we also found that most labs want to do the right thing, making new policies to help, etc.

It’s a hard problem.

Thing is, this *really* matters for cancer patients - these data are a part of them, and the meaning attributed to liberating and “owning” one’s cancer genomic data was profound, e.g.:

"My body, my tissue, my data!"

Imagine if we overcame these issues → With the @MedicareGov decision on NGS testing (see: goo.gl/Mhmo9j), we’ll rapidly approach >1 million cancer patients with genomic data.

Liberation & donation of these data for research could be genuinely transformative!

We propose/describe a cancer genome collective that empowers & educates patients on principles of data liberation (genomics or clinical data)

→ Patients could donate these data to research (e.g. to @AACR GENIE), share w/ providers, and/or be contacted for eligible studies

In this model, patients are at the *center* of their own data & can push it in whatever direction they choose (as it should be).

It will require harmonization across labs, EHRs, etc and needs the entire community working together on behalf of patients...

Also, it won’t be cheap → our pilot was done w/ gracious donation of time/effort by cancer patients at the cutting edge, but to work broadly will need a large (philanthropic) investment to facilitate.

We have a protocol/plan in place, now searching for non-traditional funders

Lastly, on a personal note, it was a genuine & inspiring privilege to briefly know @CultPerfectMoms @CurrentIncurSci during this pilot effort, so on Thanksgiving week I want to give thanks for knowing them...

May their memories be a blessing

/[fin]