AllOfUs

Today I scheduled my intake appointment as a participant in the AllOfUs program.  My PCP is the PI for their efforts with AllOfUs in the group practice that I use in central Massachusetts, and so I signed up to participate this morning.

It took me about 15 minutes to sign up.  The consent process was very well done, and very well written, in quite understandable language.  I'd guess the reading level of the content was around 6-7th grade, but was also a highly accurate representation of what the program is doing, which takes quite a bit of work if you've ever had to do that sort of writing.

The surveys took me another 10 minutes to complete and were especially easy since I'd already seen them having read through the protocol previously.

What surprised me was getting a call from my practice to schedule the appointment, but my sense is, they are already very engaged in this effort (I was to have participated as a patient representative in their outreach program, but was unable to attend the initial meeting due to battery problems with my motorcycle).  That was cool, and took about 5 minutes.

I'm looking forward to see how the program operates from the patient perspective, especially since some of the standards work I'm engaged in now can help refine it from the research perspective later.

   Keith

A QueryHealth for AllOfUs

Those of you who have been reading this blog for years are already familiar with what I've written in the past about Query Health.  For those of you who haven't check the link.

Recently, I've been looking into All of Us, a precision medicine research program that takes the ideas of Query Health to the next level.  The original thinking on Query Health was about taking the question to the data.  All of Us has a similar approach, but instead of querying data in possibly thousands of information systems, it uses a raw data research repository to collect data, and a cloud-based infrastructure to support research access to the curated data that is prepared from the raw data sourced from thousands of information systems.  I find the best detailed description today to be found in the All of Us Research Operational Protocol.

There's a lot to be learned from Query Health, and the first thing that any group putting together a large repository of curated and anonymized data is certainly going to be security and confidentiality.  Anonymization itself is a difficult process, and given the large data sets being considered, there's no real way to fully make the data anonymous.

Numerous studies and articles have shown that you don't need much to identify a single individual from a large collection of data collected over time.  A single physician may see 3-6 thousand patients in a year.  Put data from two of them together an the overlap is going to be smaller.  Add other data elements, and pretty soon you get down to a very small group of people, perhaps a group of one that combined with other data can pretty easily get you to the identity of a patient.

For Query Health, we had discussed this in depth, and regarded counts and categories smaller than 5 as being something that needs special attention (e.g., masking of results for small counts).  There was a whole lot of other discussion, and unfortunately my memory of that part of the project (over 8 years old now), is rather limited (especially since it wasn't my primary focus).

Another area of interest is patient consent, and how that might related to "authorization" to access data via APIs from other external sources.  A lot of this can be automated today using technologies like OAuth2, OpenID Connect, and for EHR data, SMART on FHIR.  But as you look at the variety of health information data repositories that might be connected to All of Us through APIs, you wind up with a lot of proprietary APIs with a variety of OAuth2 implementations.  That's another interesting standards challenge, probably not on the near-term horizon for All of Us, considering their present focus.

It's interesting how everything comes back eventually, only different.  One of my ongoing roles seems to be "standards historian", something I never actually thought about.  I'm guessing if you hang around long enough, that becomes one of the roles you wind up adopting by default.