Search all of the Society for Participatory Medicine website:Search
No MU without ME badge

Click to download this social media badge. See blog post for instructions.

Several edits made, 1-2pm
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 just SPM – need your help.

If you’re in a hurry, skip down to the Do this first section. But come back and learn more about why this matters.

What’s at issue

A proposed rule change from Federal regulators would reduce 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 a reality. For more information, see our post Monday.

What’s this “MU”?

These regulations define what’s called the “meaningful use” of medical record systems, or “MU” for short. 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.

Our response: “No MU without me.” We want regulators to require easy 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.)

We know that although moving data around is new to providers (“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 to the hospital online if they want to. Healthcare is smart; they can do it.

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.

What happened last week

As detailed in our post Monday, two things happened:

  • ONC, the agency responsible for health IT in America, reported to Congress that some providers and vendors are “knowingly interfering with exchange of information.”
  • Then, late Friday, CMS (the Medicare/Medicaid agency) announced drafts of new regulations, including one that would roll back its data sharing rules. The current rule requires that a provider must show that 5% of its patients actually did view or download their data or transmit it to another doctor. (View/Download/Transmit is called “VDT.”) In short, this regulation means they actually have to make it work, not just claim that it’s possible.
    • The new draft says no more “5% rule” – they only have to show that one patient has done it, and they’ll get full federal reimbursement.
    • If you’ve ever developed a software product, you know that making it work for one user is VERY different from making it work for lots.:-)

That difference – one user or hundreds – is what’s at stake here. Again they’re saying it’s too hard, and we’re saying we must. We need it, we can do it, and it’s important. It’s for providers too, not just for patients. For better care.

If the rules are rolled back so they get full pay without really making it work, you can kiss most families’ chances goodbye, at most hospitals. Their data will continue to be hard to get from most providers.

They say it’s too hard and you don’t care.

Here’s the kicker: they say we don’t want it; they say we don’t even ask. (To get the first level of Meaningful Use funds, 2/3 of hospitals swore that not a single patient asked for their records!  Not one!)

So part of this campaign will be to help them see that we do care. :-)

Why it’s a problem

Students of this field – both patients and physicians! – have said for years that patients are the most underused resource in healthcare. Heaven knows healthcare needs all the help it can get. And this isn’t just about patients – it’s about making all of healthcare work better:

  • No doctor can do what they’re trained to do if they don’t have the facts. It impairs doctors if they don’t have all your information, including from previous providers. Saying “it’s too hard” is not sufficient – this is important!
  • Most medical records contain mistakes. This was front page news in the Wall Street Journal last June. (See our post about it.) Mistakes in the chart will surely cause harm – and someday that will likely include your family. You can help: get your chart and proofread it.
  • The future of medicine requires “Patient/clinician partnerships” with “engaged, empowered patients.” Those are the words of the Institute of Medicine, so no provider can claim patients have no business being involved in their work. Yet that is essentially the effect of the proposed regulation – to keep each provider’s data (about you) close to their vest.
  • And that begs the question: “How can patients participate if they can’t see what I see?” Those are the words of my doctor, Danny Sands, co-founder and co-chair of our Society.

Our data must be movable. Easily – when it’s needed!

Our response

A coalition of organizations, coordinated by the National Partnership for Women & Families and Consumer Partnership for eHealth, is mounting a coordinated campaign to fight back, through social media and responses in the government regulatory process. The symbol, the “badge,” so to speak, is the “No MU Without Me” graphic, above.

We are asking you not just to take action yourself but to talk to your friends. Because – make no mistake about it – someday your family’s health will most definitely be affected. It’s about improving the deplorable state of data mobility in healthcare. What’s at stake is everything about your ability and other providers’ ability to provide better health and care.

Do this first:

1. Display the social media badge: Click the image above and download it to your computer, so you can use it for your “profile picture” on Twitter, Facebook, etc.  (Here are instructions to change your picture, from Twitter (Wikihow is better) and Facebook (again Wikihow is better).

2. Tell others. I know some people will want to be a neighborhood Paul Revere, but you can just tell anyone who has medical records. (The hashtag  on Twitter is #NoMuWithoutMe.)

The URL for this blog post is easy to remember – (“No MU without me,” lowercase, no spaces.)

Do this later:

As our Monday post said, a National Day of Action is being planned. Until more is published about this,

1. Speak up as a citizen: participate in the Federal process.

1a. Sign the National Partnership’s letter to HHS (PDF). (See link at bottom of the letter.)

1b. You’ll be able to file public comment on the proposed regulation, online.

2. Ask your providers – all of them – for your records. You already have a legal right; start the process.

Don’t wait for a crisis. You may not be in a crisis now, but someday you will be. Same as with fire extinguishers – don’t wait. Show that you do care, you do want your records. Put an end to the beliefs of providers who say “Don’t make us do this – patients don’t want it. Nobody’s even asking.” Speak up. Ask.

Nothing about us without us.

“No MU without Me” is a new twist on an age-old theme: Nothing about me without me. We’ve written about it for years, and yesterday Dr. Tom Delbanco of the OpenNotes project told me they’ve traced it back to Poland, 400 years ago.

Social change and technical change are hard. But people’s lives are at stake, and that’s something worth doing hard things to improve. We can do it; they can do it. Please join the “No MU Without Me” campaign. Plan for action, and bring friends. It will affect them, too.



Please consider supporting the Society by joining us today! Thank you.