Screen capture of KQED postThe advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help – or don’t help – patients be active contributors to their families’ health and care. This is excruciatingly important as America debates the proposed rule changes for patient data access mentioned here last month.

An important new post yesterday by @ChristinaFarr on the KQED Science blog, Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’, starts with the story of Julia Hallissy (right) and her daughter, Julia Hallissyin which her active engagement with the chart found many mistakes and missed facts. Our best-known member, Regina Holliday, is quoted as saying “This is a slap in the face of patient rights,” and is featured in the post’s cover photo and another picture.

Access to our records, and their easy flow from doctor to doctor, can literally be a matter of life and death, yet a report sent to Congress last month says some players are “knowingly interfering” with their transfer. Government policy must forbid this: it is a source of harm. And policy must encourage the flow of our data, including teaching providers how to teach their patients. Clearly there is value when patients help manage the data; we must enable it, even if it’s hard to do. Please, vendors – improve the software – make it easier for providers to help patients do it.

And hey, vendors – if your system is good at it (and has higher patient participation), brag about it! Shout about your achievements! This is important.

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