{"id":17257,"date":"2015-04-16T11:24:48","date_gmt":"2015-04-16T15:24:48","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=17257"},"modified":"2015-04-16T14:54:13","modified_gmt":"2015-04-16T18:54:13","slug":"no-mu-without-me-join-the-campaign-to-fight-health-data-hiding","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2015\/04\/no-mu-without-me-join-the-campaign-to-fight-health-data-hiding.html","title":{"rendered":"“No MU without ME”: join the campaign to fight health data hiding"},"content":{"rendered":"
\"No<\/a>

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Several edits made, 1-2pm
\n<\/em>There is a movement underway – a movement for patient liberation and autonomy – and the empire is striking back, interfering with our efforts. We – the whole movement, not\u00a0just SPM – need your help.<\/p>\n

If you’re in a hurry, skip down to the Do this first<\/a> section. But come back and learn more about why this matters.<\/em><\/p>\n

What’s at\u00a0issue<\/h3>\n

A proposed rule change from Federal regulators would reduce\u00a0<\/em>the requirement for healthcare providers (hospitals and doctors) to share and have us use our medical information that’s in their computers. In short, these people have told regulators that it’s too hard, and they want to get paid without making data sharing\u00a0a reality.\u00a0For more information, see\u00a0our post Monday<\/a>.<\/p>\n

What’s this “MU”?<\/h3>\n

These regulations define what’s\u00a0called the “meaningful use” of medical record systems, or “MU” for\u00a0short. Providers get funding for these systems if they meet the MU regulations. They’re saying they want full MU funding even if we – the patients for whom the data exists! – never get our hands on it.<\/p>\n

Our response: “No MU without\u00a0me<\/em>.”<\/strong> We want regulators to\u00a0require<\/em>\u00a0easy access to our families’ records, and that it must be reality, not just theoretically possible. (That’s where the rub is, as you’ll see.)<\/p>\n

We know that although moving data around is new to providers\u00a0(“it’s too hard”), they can do it. They said the same thing about installing the systems in the first place and opening up “patient portals” for us: it’s hard, it’s onerous, we’ve gotten along fine without computers. But they succeeded: today 86% of patients do have a portal where they can talk\u00a0to the hospital online if they want to. Healthcare is\u00a0smart; they can do it.<\/p>\n

Note: previous MU regulations and funding are why we have those portals today. We want the next regulations to continue modernization and continue empowering patients and families, not move backward.<\/p>\n

What happened last week<\/h3>\n

As detailed in our post Monday<\/a>, two things happened:<\/p>\n