Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.
This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.
So it was a thrill last month to deliver the opening keynote for the Redox Connect Customer Conference in Philadelphia. These people are making my dream of a “health data spigot” come true, and it’s exhilarating! (For newcomers, here’s the spigot graphic I published seven years ago… a demand that’s now coming true!)
The keynote’s venue was appropriate: the Masonic Temple across from City Hall, where Ben Franklin and others like George Washington imagined the new world of life, liberty and the pursuit of happiness.
The speech was about what a difference the FHIR standard makes in the context of Redox’s “Composable Healthcare” concept. (FHIR is the software standard that medical computers must now use to exchange information.)
At one point I told Regina Holliday‘s story of being so mistreated during her husband’s tragic cancer story, where a hospital told her it would be 73 cents a page to take his medical record to a different hospital – and it would take 21 days… as he lay in pain awaiting the chart. I donned the Walking Gallery of Healthcare jacket that she painted for me, showing the phone call where she and I met as she sought help in 2009, crying on the phone while cooking dinner for her son.
That ridiculous per-page price became the movement hashtag #73cents.
Such charges and delays are illegal now, but that still doesn’t make it easy to move the data. That’s where FHIR comes in. It’s how records will now move between computers, instead of by paper (or fax). (Redox is one company pulling data together like that, using FHIR and other standards.)
As the story moved forward I took off that jacket and held up the new one that my wife painted last year – her first contribution to the Walking Gallery: the FHIR logo. The effect was to convey how our advocacy – so many of us – has succeeded in changing the future of Health IT.
I’m so grateful to all the advocates in the patient world and the policy world who did this work, and positively THRILLED to see companies like Redox creating the world we envisioned, where our data can be at the point of need WHEN it’s needed – and not at a price of 73c/page and 21 days.
Adapted from this LinkedIn post last week, which got hundreds of engagements, which led me to bring it to a wider public audience. I think it’s important everyone understand how access to their health data is starting to open up!