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Six weeks ago we hosted the Patient/caregiver letter supporting proposed HHS rules on improving flow of our data. It’s a crowdsourced collection of stories of how patients suffered, were harmed, incurred costs or delays because their own health data wasn’t at the point of need – or benefitted when data was available. A dozen more stories were added in comments. It was kindled by SPM member Morgan Gleason, produced with my help and posted here.

Last week several of us, including SPM member Grace Cordovano, were invited to participate in the HealthDevJam preconference that was to be today, at the opening of the HIMSS health IT conference in Orlando. We created this silent three minute video giving a new format to these stories.

Grace has agreed to give this project a home at her Unblock.Health site, where it will live on in expanded form. Details are still unfolding, but as another patient movement said, we are not waiting. Activists take action.

Why we’re doing this

Some opponents of data access and interoperability have warned vaguely, basically saying, “You don’t know what you’re doing. Something bad might happen if your data gets out.” We echo the great Greta Thunberg, saying, “How dare you!” We do know exactly what we’re doing. Bad things already do happen when our health data is prevented from moving … and good things can happen when we do have access.

Please watch and share.



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