“No MU without ME”: join the campaign to fight health data hiding

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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 – bit.ly/nomuwithoutme. (“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.

 

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Comments

26 Responses to ““No MU without ME”: join the campaign to fight health data hiding”

  1. Panha Chheng says:

    A social movement is forming. Power to the people.

  2. Ian R says:

    It frustrates me to no end that in order to see my FULL records, I have to do a formal records request via paper and pen. If my care team has access to my full electronic record whenever they want it, I should too.

    Here’s a specific example of harm (or the risk of it) that comes with not having electronic access to my complete records. My primary care doctor was unexpectedly out for 3 weeks while I was waiting on results from an overnight sleep study. Because the observation notes and physician report are not available to me via the patient portal, I had to request my records to see them. I already do this periodically, but as my pdoc hadn’t been in for 2 weeks at that point, I thought there was a good chance the report was done and in my record.

    When I read the report, I found a *giant* error in what had been recorded, which had a significant impact on the recommendations. (The technician incorrectly reported my nightly medications. The ones recorded that shouldn’t have been have sleep-modifying effects.)

    While it’s possible my pdoc would have checked with me to see if that was accurate, it’s more likely that it would have been missed. I sent a message immediately stating that was inaccurate, but even so, I don’t think my records have been formally corrected. This single error had the potential to drastically alter my course of treatment for my sleep disorder, and I wouldn’t have had any clue why.

    This wasn’t even something imminently life-threatening, it just has the potential to make my life continually miserable.

    I’m tired of the excuses. We should have immediate access to our full medical records.

    • Great and pertinent example, Ian! I’m going to tweet this separately! Thank you.

      You might even click the link to sign the Partnership’s letter to CMS. It opens a new email, and you can paste in your example.

      • Ann Waldo says:

        Thanks for sounding the alarm on this, Dave. I signed on to the Nat’l Partnership letter and plan to submit my own comments to CMS.

        Progress toward expanding access to medical records has been painfully slow. Real-world access needs to advance further, and quickly.

        One small example – a doctor recently charged me $20 for 20 electronic pages of my records. When I politely complained to the office manager, including offering my opinion as a HIPAA lawyer that such a charge was excessive under the new HITECH rules, he absolutely insisted – $1/page, whether electronic or paper. My only recourse was to pull out a credit card or go without the records. Absolutely infuriating. Imagine if your bank charged you $1/page to show you your own financial transactions!

        Like you, I’m very unhappy about the idea of rolling backwards the View-Download-Transmit requirements of MU. A major step in the wrong direction. Let’s all write to CMS!

  3. lElizabeth Rankin says:

    SPM as an organization must ask this group to prove to us that not one person asked for their data. This seems preposterous to me. If anyone in SPM has ever had access to using one of these facilities they should request all their data and see if they get it and report back to a designate at SPM.

    The other possibility is to get very political. Place an ad in, or send an article about the problem to the big major newspapers and request patients to ask their practitioners and hospitals for their data and see what the response is. Obviously you put the story out first in a way that arouses a response about the MU. This way we can know how many patients want their data and how many might recognize their data was denied rather than provided. It would be interesting if those who said no patient asked for data, [because you listed those hospitals] and those patients who read the article were told they didn’t have any data or they couldn’t have their data or they were just never provided their data, might help to turn the table upside down on this issue.

    • They don’t have to answer, Liz. They only have to comply with the HHS regulation, and the regulators said it was okay for them to “attest” to it. All they did was pick one of the allowed options.

      Far more effective is for us to, as Farzad said Sunday, “help them” get some patients who DO ask for their data. Far better to make the right thing happen in the (near) future than get into a fact-wrangling argument about the past.

      Your help as an avid activist will be great in this, as the campaign unfolds! Stay tuned!

    • btw, on Sunday I also mentioned to Farzad that it would be totally modern if someone would put together a robust, well designed website to be a “records request valet” or some such: A place where a patient could go and say “I’m a patient of Hospital X” (of course it would let you search), and you’d fill out the simple records request and the system would submit it.

      Not only would it be easier than what people often have to do today; it would conveniently keep a tally of how many requests Hospital X *has* received, so they don’t have to.

  4. Carson Holbrook says:

    Being an IT consultant for a variety of MU participating medical practices, our challenge is to get 5% of our patients interested in their medical records. On one hand I work with Medicaid attesters whose client base toss their clinical summaries in the parking lot who really aren’t going to be clamoring for their ability to get it electronically as most do not have computers or tablets, just federally subsidized smart phones. One the other hand the elderly (patients in their 80’s – who still write checks to pay for their groceries, my 90 year old mom, included), are interested in their medical problems but do not own a computer much less a smart phone (they love the flip phone with the HUGE numbers). To have a doctor’s MU reimbursement tied to patient behavior is kin to have a teacher’s performance graded on the English proficiency of a classroom of non-residents. It seems backwards, at least the cart is way before the horse. Doctors fax volumes of patient medical records today instead of transmitting them electronically via a HL7 compliant format which can be seamlessly be imported into a patient’s chart with minimal labor. Concentrate on the doctor-doctor transmission first. Likewise, give non-residents special tutoring to help the teachers reach them in teaching basic, core subjects.
    Now I do say that there are patients who want their data, however a particular patient portal, which will go nameless, isn’t quite ready for prime time, doesn’t transmit EHR patient data in a scrubbed, rather than a raw format, sometimes erroneous (listing discontinued meds, etc).
    We are headed in the right direction but are not there yet, far from it. Implementing EHR requires workflow changes, training, has s steep learning curve, but it is not all bad. The ability to e-prescribe, EHR performs drug-drug, drug allergy checks, enhancing patient safety. Posting child immunizations directly into state registries.
    EHR’s are not cheap to implement and MU reimbursements don’t even come close to recovering their costs, but it is in the step in the right direction.
    It would be huge if patients ask for their electronic records in droves, perhaps a chance for some portals to clean up their act.

    • Thanks, Carson – I hope to respond tomorrow.

      Today I read a post somewhere listing the percentages (11% was the lowest) where patients were actually using vdt. We need to figure out the differences.

      • Tina says:

        We work with several medical offices and had to twist and turn and find different ways for them to actually get patients to engage and sign up for the portal. We had some offices who topped out at 4% and we couldn’t figure out how to get them higher. I think to put all of the onus on the practices and say the Federal government is now making it easier to not share their data really isn’t being fair. CMS is changing the measure (don’t get me wrong, I disagree with just attesting to 1 patient also), partly because doctors couldn’t actually get patients to care and engage. Patients share some of this responsibility too.

        • Hi Tina – yes, of course patients have some responsibility – but over and over when I talk to ordinary people in my communities, they don’t even KNOW that their docs have portals, or if they do, why they’d be useful. Patients can’t solve that.

          I know that one massive problem is that no training is given in medical schools or anywhere else about how to use computers, much less how to reach out and communicate in new ways with patients. But for cripe’s sake, that’s part of what the RECs taught.

          I’d really like to see a correlation between any given provider’s REC use (that was FREE training provided by the government) and their position today on this issue. I do assert that if a provider said “I got no time for the free REC training” and now says “I don’t know how to do this,” it makes me say “Hmmmm!”

          We should all remember, IMO, that the RECs were modeled on the Dust Bowl era’s Agricultural Extension Centers – the “teach me to fish” approach. In those days, if you declined the free training, you had a consequence (hunger and bankruptcy, right?) Today, is it sensible for people who declined the free training to then bitch at the government??

          I don’t know – maybe that correlation doesn’t exist. But I’m really tired of hearing (e.g.. ONC’s report to Congress) that unspecified vendors and providers are “knowingly interfering” (those were ONC’s words) with transfer of patient records to where they’re needed. This has to be a close cousin of this issue, and it’s not funny at all.

          WELL! I guess we know where *I* sit on this…. :-)

  5. Dave,

    as I have already written in a comment on Hugo Campos’s Facebook post about the same issue, I’d like to see the CMS story into a much broader perspective. As long as patients groups only reacts to specific regulatory changes our impact will be minimal.

    The issue is not access to EHR data. It is about you, me and every other person living in the US having simple, direct and free access to any data resulting from the collection of biological samples, tests done on my body or implanted devices.

    If something is done on my body I must have access to all the data resulting from it. The current EHR issue is just a subset. The lack of access to data collected from research subject is another obvious one. Hugo’s lack of access to the data produced by his implanted defibrillator is yet another obvious example. It’s a universal human rights issue, not a regulatory one.

    We are used to say “Nothing about me, without me”. It is now time to also say “No data about me, without my direct access to it”.

  6. Pete says:

    We should set up a website and ask people to go to their doctor or hospital (or visit the website) and request their records. The most compelling evidence will be proof that (a) people are trying to get their data and (b) that they are finding barriers.

    Maybe a FOI request for who received a MU payment for accessibility of medical records could help us to identify hospitals/providers to spot-check for accessibility? A web-database of providers listing whether or not they have gotten a CMS bonus for MU, linked to actual patient reports on their experience accessing their records could inform us about how “meaningful” the “meaningful use” criteria are.

  7. Amy Gleason says:

    My daughter has a rare disease and sees 12 healthcare providers across 6 health systems. We have found errors in the records of almost all of them, and we have had many, many occasions where the doctors didn’t have access to recent tests or results. By giving the patient access electronically, the information can always be accessed from anywhere. I know the proposal says that a single patient means it is enabled, but medicine is very slow to change. If we don’t put pressure on the system to actually TELL patients about it and to HELP them understand why it is import and and how it can help them, we won’t have much improvement. Most people don’t know that they need their records until a crisis hits, and at that point, it is often either too late or then it is too exhausting to deal with being sick and having to navigate the web of getting records.

    We need to be proactive in teaching patients about this when they aren’t in crisis. My mom was diagnosed with lung cancer and sent to a specialist out of state. Her doctor Fedexed the records to the medical center in Texas. When she arrived, they couldn’t find them. Thankfully, she had access to them on her iPad and was able to share them with the doctor. She didn’t know it was important to have them because she thought the doctors just had it all under control. Thankfully, her daughter knew it was important and made her have them on her iPad. If her doctor had encouraged electronic access, it could have been a win for both of them.

    As another example, I had a CT scan where the radiologist made a typo. It was a very simple typo in which he wrote the word “not” in a sentence where it shouldn’t be there. Thankfully, the ER doctor told me what he saw so when I saw the report, I knew it wasn’t right. However, my GI doc who received the report wouldn’t have known about the typo if I hadn’t told him. Additionally, it wouldn’t have been corrected for future reference. Patients really can help if they are given access to the records.

    I understand that doctors say that they can’t control patients and make them get access. I might even agree if the criteria were 100% or even 50% of patients. However, it is currently 5%. If you can’t get 5% of patients to look at the information written about them, then either you aren’t communicating the need well or you aren’t offering the information in a way that is useful to the patient. In either case, the criteria of making sure at least 5% (and more in MU3 as we adapt), forces some behavior change. After all, this isn’t free money. It is money paid by taxpayers and it shouldn’t be simple to get. The point of the whole program is to stimulate change for the good of patients.

    Nothing should be recorded about me or my health that i don’t have access to see it.

  8. Jeff Donnell says:

    No MU without ME is a great call to action and a movement that is critically important. When meaningful use stage three proposed rules were recently issued, the requirement that five percent of patients actually view, download and/or transmit their electronic health information was ratcheted up to thirty-five percent. This was understandably viewed by many healthcare providers as a bridge too far designed by unrealistic policy wonks. As is often the case when proposed rules raise the bar too much and too fast, many of us who watched this process unfold during stages one and two expected a boisterous public comment period filled with wailing and teeth gnashing followed by the issuance of a final rule settling on a V/D/T requirement in the ten percent range.

    Before the pitchforks could be removed from the barn and brandished, CMS threw an unexpected curveball just prior to the HIMSS conference, publishing a proposed rule that all but eliminates any V/D/T thresholds. The new proposal would only require that a single patient access his or her data to show that the capacity for digital engagement exists.

    If you are lucky enough to be the first patient to ask for your electronic data during a meaningful use attestation period, you can view, download or transmit your digital clinical summary as though it is the year 2015.

    If you are the second patient (or the 22nd, or the 102nd) to make the same electronic records request, you will be left holding the bag while old Dr. Welby reassures you that there is no need to worry about that newfangled electronic engagement nonsense.

    Those of us who have toiled for years to promote patient engagement are used to two steps forward, one step back. What we did not expect was The Karate Kid illegal leg sweep designed to maim patient access to electronic records and force the forfeiture of the match.

    The timing adds insult to injury, and certainly undercut the significant volume of HIMSS educational programming focused on electronic patient engagement. Those contemplating the rule rollback should have attended the presentation by Dr. Jeff Hatcher from Margaret Mary Health, an Indiana critical access hospital that has convinced more than twenty-five percent of its patients to create a community patient portal account and engage electronically. By giving patients a single tool to manage their health information, building portal promotion into provider workflow, and using some creativity to connect consumers and clinicians, Margaret Mary Health is now collaborating electronically with a diverse patient population that includes a fair share of seniors and rural residents.

    Not so long ago, “engaged” patients were the people depicted in stock photos on hospital websites — a smiling-in-spite-of-the-green-gown healthcare consumer surrounded by a caring nurse and a concerned physician. We made significant progress over the last few years — using health information technology to make electronic data available to patients who are then better equipped to actively participate in their care. This kind of engagement seems to make sense in a patient-centric age.

    Is a thirty-five percent V/D/T requirement realistic for stage three? No, even those of us who make a living in this space would agree this was an overreach. Far more preposterous is the elimination of the current five percent threshold in favor of electronic engagement with a single patient. What makes more sense is what most of us expected — a requirement in the ten percent range with appropriate and reasonable exceptions for providers who truly have no hope of clearing the bar.

    But hey, don’t take my word for it. Just ask patient number two and those in the growing engaged patient crowd who expect, in 2015, to get easy and unfettered access to their electronic health information.

  9. Leonard Kish says:

    Haven’t seen it on this thread, or post, but the place to file public comments on the proposed rule change is here:
    https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to#h-41

    Leonard Kish

  10. Sherry Reynolds @cascadia says:

    Patients are part of their care teams and need the exact same access as anyone else does..

    As someone who first raised the alarm about this the Friday before HIMSS I actually believe that the CMS rules might not even matter for most people since any clinic, doctor or hospital who doesn’t understand the importance of partnering with patients won’t be in business for long.

    It is still however critically important that CMS and the industry understands this and includes this as a core value in the policies. It really however isn’t about x% of patients getting data it is about realizing that patients are partners in their own care and should be able to be full active vs silent ones.

    We never for example would suggest that doctors have 100% access in real time, nurses 80% access in an hour, MA’s 50% access in four hours, Insurance companies 10% access in a day so why is it okay to suggest 5% of patients get access in 4 days?

    Patients are part of their care teams and need the exact same access as anyone else does..

    FYI it also helps to remember they are also the only ones who are paying to be there – the rest of the care team is making a living off their illness and essentially works for them.

  11. Jordan Grumet says:

    Dave,
    Every time I see a patient my EMR automatically sends them an email asking them to log into my portal. To date, after 2 years, less than 1 percent have actually logged in. Today I literally begged a patient to sign up so I could get credit for MU. She refused. I don’t even want the MU payments. I just don’t want my current payment rate to be cut. In my humble opinion, meaningful use is one of the most destructive, dangerous programs threatening health care today.

    • Wow, Jordan – I know you’re a patient-oriented doc – what is everyone’s objection?? Could there be some cultural thing, some suspicion of computers in general? Do they seem to understand why this would be a good thing to do??

      There’s a big mystery in here somewhere and I certainly don’t know what it is. So far, of the providers who’ve attested to being in compliance, the median physician has 32% of patients doing it and the media hospital has 11%. (That’s from an ONC webcast last November.) Both are WAY over the 5%. Can you think of what the heck the difference is??

  12. bw says:

    Did you ever stop to think if this was such a great thing that no requirement would be necessary?

    It’s an important thing to you. And you want to blanket the country with your wants. Find a doctor with a portal you like and lets hope he does the things well that are actually important.

    • I don’t follow, bw – what do you mean “if this was such a great thing that no requirement would be necessary?” Are you suggesting that because people aren’t doing it, there’s no use for it? When people suggest that it always reminds me of the rationale for not letting women vote. One of those bullet points on that flyer: “It can be of no benefit commensurate with the additional expense involved.”

      I recall that in the 1950s people felt similarly about seat belts for cars: “We’ve been getting along fine without it.”

      By “the things that are really important” are you saying in your view, patients having access to their data isn’t important? What if I think it’s important?

      Or am I misreading your intent?

  13. bw says:

    Indirect personal attack mode? I think that means you get it.

    • Oh, for heaven’s sake. I said I don’t understand what your non-specific “Did you ever stop to think” meant, and I ask specific questions, and you say that’s an indirect personal attack?

      If you want to discuss something specific please say so. If you don’t want to say it in public you can email me, dave at epatientdave.com.

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